Me and my big arm.

“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-which-is-often-named when you've gone though breast cancer surgery and treatment, but always in the context of how to avoid it. There give you several "simple rules" to follow, and 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 to follow: 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 will go away, I thought. About 6 days later I noticed my entire arm was swelling, and over the course of about a day it became concerning. I was running cold water on it, keeping it moving thinking that would help with the swelling. But when Bob took a look at it 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 go see someone about something that seemed pretty minor at the outset that meant we were gong to have to go see a 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 order, (4) long wait for results, and (5) my first diagnosis of lymphedema. The doc told me to see my family doctor for a follow up the next week, look into compression and probably physical therapy.

About five  days later my family doctor said she confirmed his diagnosis. She ordered a compression garment and physical therapy. Now, I didn't know or remember that I could be this stubborn (stop laughing, you who know me), but I thought, nope. I refuse to accept this. It doesn't add up. So I decided to go for another opinion.

A week later there I was, on the phone with a nurse from my radiation oncologist's office, and he was confirming that it was lymphedema. 

And I went through the same litany with him as I had with the ER doc and my family doctor. Cancer surgery was six and a half years ago! I followed all the rules! I had zero swelling after surgery. I had zero swelling in chemo or radiation or after. I am physically in fair shape. I eat fairly well and I'm fairly active. So the question again was, “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 prompt and poke and eventually the medical person will give up things like this:

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

Have we had a patient who had one lymph node removed and then later developed lymphedema? Yes.

Have we had patients with all their lymph nodes removed who didn't get lymphedema? Yes.

Funny how when pressed they usually ask and then answer their own questions. I'd struck a nerve. So, I told the guy on the phone that I would accept this diagnosis, and do what they prescribe to help heal it, if that's even possible. I think he then said: watch out for swelling and contact us with any questions.

So there I was. Bob, of course, was just shaking his head with a look that said, “finally?” He had, through the course of the weeks from the first lump to this 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 to that is easy. Because there is, in some circles, subtle judgement passed that implies that I did something wrong. That something I did or did not 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.

The fact is that lymphedema can be triggered by things we do or not do. But as they have told me (repeatedly, nauseatingly), everyone is different. Lymphatic systems that have been compromised by surgery or cancer treatment can, I guess, work fine for a long time and then just “give up.” Through no fault of your own, it can just happen. So here I am, a unicorn once more.

(There is another side of this that I haven't been ready to talk about yet. It will likely be a separate essay. And that is: the gifts cancer keeps on giving. This is one of them.)

I'll run you through the rest of this quickly. I found a physical therapy office in the area that has a person trained and certified in lymphedema therapy (super important, according to the oncologist's office), and had two initial appointments with her. She measured me for a compression sleeve and gauntlet, which I am to wear during the day and off at night. (Sidebar: before this I tried one of those Tommie Copper sleeves. It is NOT the same as a medical grade compression garment.) 

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

At my fourth appointment, measurements were taken and my arm has reduced in size overall. I was told this is a progressive thing and that over time we should continue to see improvement. Goals are to reduce swelling and keep it down, and return as much to normal activity as possible (Here's an example of this, which you might find funny. My arm and especially elbow and forearm have been so swollen that at times it was very difficult to make the sign of the cross.). 

The bottom line on the compression garment is that it may be something I will need to wear indefinitely. I will (apparently) learn how to know if I need it more or less, and manage the swelling this way. It is likely that this will never completely go away but will be something I deal with as an ongoing issue. At least that's what I'm gathering. 

Lent has been extra Lent-y this year, for many reasons, this being one of the bigger ones for me. So I keep reminding myself that this season above all is one in which I can decide to look at this 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 my top because my arm doesn't fit into the sleeve, and this gauntlet makes it difficult to type. 

But I am trying. Pray for me, I'll pray for you, okay?