The Weight of Lymphedema

“The ultrasound showed nothing abnormal, no masses. What we saw is consistent with a diagnosis of lymphedema.”

I stood, stunned—not knowing whether to hurl my phone against a wall or dissolve into a puddle on the floor.

Lymphedema. I have lymphedema in my right arm.

This is the disease-that’s-often-named when you’ve gone through breast cancer surgery and treatment, but always in the context of how to avoid it. They give you several “simple rules” to follow, a pamphlet with some frequently asked questions, and then you’re sent on your way.

The rules they gave me six and a half years ago were easy enough: don’t have your blood pressure taken on your right arm, and don’t have blood drawn from your right arm (forever after). That was essentially it. And then the parting words were: watch out for swelling and contact us with any questions.

So all these years later, this happened.

The last Sunday in January, I discovered a kind of lump on my right forearm that felt like a bruise—but without the bruise. I didn’t think much of it but mentioned it to Bob. He, of course, said, “Go see someone.” I shrugged it off. It’ll go away, I thought.

About six days later I noticed my entire arm was swelling, and over the course of a day, it became concerning. I was running cold water over it, keeping it moving, thinking that would help. But when Bob took a look that evening, he said: “You are not getting on a plane tomorrow until we know what this is.” I was packed for a work trip flying out the next day.

It was a combination of lousy timing and my refusal to see someone about something that had seemed minor that meant we were headed to the doctor the next morning to at least rule out anything serious.

The order of events was:

(1) Went to the walk-in clinic.

(2) Was sent to the hospital for blood work and an ultrasound to rule out blood clots.

(3) Cancelled flights per doctor’s orders.

(4) Long wait for results.

(5) My first diagnosis of lymphedema.

The ER doc told me to follow up with my primary care doctor, look into compression, and probably start physical therapy.

About five days later, my family doctor confirmed his diagnosis. She ordered a compression garment and a referral for PT. And I don’t know if I’d remembered just how stubborn I can be (stop laughing, those who know me), but I thought: Nope. I refuse to accept this. It doesn’t add up. So I went for another opinion.

A week later, I was on the phone with a nurse from my radiation oncologist’s office. And he confirmed it, too.

And I went through the same litany with him that I’d already gone through with the ER doc and my primary doctor:

Cancer surgery was six and a half years ago! I followed all the rules! I had zero swelling after surgery, zero swelling during chemo or radiation or after. I’m in fairly good shape. I eat pretty well. I’m active. So… why now?

Like with most things related to cancer or mysterious conditions like lymphedema, the theme song is: everyone is different.I hate that answer.

So I poke and prod until eventually, the medical person gives up a few extra crumbs, like this:

• Have we seen someone go years after surgery and suddenly develop lymphedema? Yes.

• Have we had patients with only one lymph node removed who still got lymphedema? Yes.

• Have we had patients with all their nodes removed who never got lymphedema? Yes.

Funny how when pressed, they often ask and answer their own questions. I’d struck a nerve.

So I told the guy on the phone: I will accept this diagnosis. I’ll do what you prescribe to help heal it, if that’s even possible. And I think he said, again: Watch out for swelling and contact us with any questions.

So there I was. Bob, of course, was just shaking his head with that look that says: finally?

He had, over those weeks—from the first lump to that final phone call—asked me several times: Will you be able to accept it if this is lymphedema? I answered without answering. No. But now, I must.

You may be wondering why I fought this diagnosis so hard. And the answer is easy: because in some circles, there is subtle judgment that implies I did something wrong. That something I did or didn’t do caused my lymphedema.

Frankly, sometimes it’s not subtle at all.

So, in addition to this pretty major body change, I was dealing with an even larger case of guilt and shame.

“Weeping Willow” by Les Scruggs, nestled in the Michigan Legacy Art Park. To me, this sculpture symbolizes the continuous journey of healing and the quiet strength found in stillness.

Yes, lymphedema can be triggered by things we do or don’t do. But, as they have told me (repeatedly, nauseatingly), everyone is different. Lymphatic systems that have been compromised by surgery or treatment can work fine for years and then just… give up. Through no fault of your own. It can just happen.

So here I am. A unicorn once more.

I’ll run you through the rest quickly.

I found a physical therapy clinic nearby that has someone certified in lymphedema therapy (super important, according to the oncologist’s office). I had two initial appointments, during which she measured me for a compression sleeve and gauntlet that I now wear during the day and take off at night. (Sidebar: I tried one of those Tommie Copper sleeves before this. It is NOT the same as a medical-grade compression garment.)

I go in weekly for an hour. I do warm-up exercises, and then the PT performs a lymphatic drainage massage that lasts about 40 minutes. In between appointments, I do self-massage, some shoulder and wrist mobility work, and I wear the compression gear all day.

At my fourth appointment, she remeasured me, and my arm had reduced in size overall. This is apparently a progressive condition, but over time, we should continue to see improvement. The goals are to reduce swelling and keep it down, and to return as much as possible to normal activity.

(Here’s an example of what I mean by that, which you might find funny: my elbow and forearm were so swollen at one point that it was difficult to make the sign of the cross.)

The bottom line on the compression garment is: I may need to wear it indefinitely. I’ll learn how to adjust depending on how my arm is doing, but it’s likely that this will be an ongoing part of life now. That’s what I’m gathering, anyway.

Lent has been extra Lent-y this year, for many reasons—and this is one of the bigger ones for me.

So I keep reminding myself that this season, above all, is when I can choose to look at suffering as a way to unite myself with Christ in His suffering for our salvation. I am far from perfect at it, especially when my elbow feels like a basketball, I have to change tops because my sleeve won’t fit, or the gauntlet makes it hard to type.

But I am trying.

Pray for me. I’ll pray for you, okay?

Author's Note

Before my journey with lymphedema began, I visited the Michigan Legacy Art Park and was drawn to a sculpture called “Weeping Willow” by Les Scruggs. Inspired by the mathematical form known as the Möbius strip. This flowing, natural shape offers a quiet contrast to the rigid, straight paths that often shape our daily lives and minds. Its flowing, continuous form quietly reminds me of the ongoing, sometimes circular path of healing—how strength and surrender weave together in ways that aren’t always straightforward. Though this visit came long before my diagnosis, the image feels deeply fitting for this part of my story.