Lymphedema At Last

I'm thinking back to my second consult with Dr. Mayfield, the one we had two days before my surgery, to the very moment when I said, "Wait. What's that you just said?"

No, this wasn't in response to his saying, "You are thin."

He had just said, "So what if you have a swollen arm for the rest of your life if you're using it to cheer at your child's graduation?"

This was in his Moment of Truth speech that I suspect he'd thought and prayed long and hard about delivering. The speech that probably got some air time during his residency, because surgeons have to give it often. The speech that, roughly translated into blunt language would sound like this: "The treatment I'm advising will suck, but dying sucks worse."

Hence the phrase "swollen arm" used with the other phrase, "So what?"

But here I am. I went through with the radical surgery that turned out to be less-radical than expected. I did the chemo. I did the radiation. My hair is growing back. My energy has returned. To gauge by all outside appearances and behaviors, I am no longer a cancer patient.

So it's no longer "so what?" if I have a swollen arm. I do, in fact, have a swollen arm and hand, this is not easily disguised and my attitude towards it is pretty straightforward: Lymphedema? Really?

So today's post will be an answer to the question on everyone's mind: What is lymphedema, anyway?

The lymphatic system is the one we did not learn about in Mrs. Saragoosa's seventh grade biology class, though she did very thoroughly cover all the others. I still know the term--check this out!--"Superior vena cava."

Nor did we learn about it in Mrs. Griffin's biology class Freshman year, though we did dissect a frog. (That was also the year Eric Lichtenberger and Sean Nolan teamed up for their science fair project and shot ants up in a model rocket.)

Nor did we learn about it in the same Mrs. Giffin's Human Anatomy course Sophomore year, though I did hang onto the enduring term, "canal of schlem."

That's right. We had time to learn about the "canal of schlem," but did not have time to learn anything more than the term "lymph node," and the fact that it was part of "the lymphatic system." I'm not being glib about this time issue. Go ahead. Take a look at a simple wikipedia entry on the lymphatic system. Pretty complicated!

The short version is this: Our lymphatic system runs roughly parallel to our circulatory system. It takes fluids to and from tissues and organs. And it's also a big player in our immune system such that when cancer cells form in some tissue, and start breaking off to hit the lymphatic highway and drive to a new organ, the lymph nodes act as little road blocks, trapping those cancer cells. The nodes will often destroy them. But sometimes they can't, or they get overwhelmed by incoming cells, and the nodes become tumorous themselves.

All of my brave little lymph nodes in my right armpit, shoulder and collar bone area that were within the surgeon's reach--including the one that really should have been out of reach--were removed during my surgery.

The radiation, which centered on my chest wall and up into my shoulder, damaged the delicate lymphatic capillaries, and whatever other lymph nodes that remained in the area. We have no way of knowing how much damage was done, or whether my body can or will repair it. We just know that my system stopped draining my right arm as it had been doing.

Lymph is getting to the tissue in my arm, but my body is not draining it out as it should. Left untreated, the whole limb would swell. And swell. And swell. I won't link to photos of this because the worst case scenarios are pretty grim.

Still left untreated, the lymph--a protein liquid--would simply harden. The skin would lose elasticity. The limb would remain permanently swollen.

It's more than a just cosmetic affliction, too. Even mild cases can cause significant pain in the affected joints. My swelling is very slight, and at this point, only remains in my first two fingers and first knuckle. But it's tight, all right. Hard to grasp things with fine motor control, too.

It's also worth noting that lymphedema is not just a breast cancer treatment complication. Sometimes people get it because of a genetic trigger. Or trauma to a limb. It's most common in arms and legs, but it can also afflict parts of the torso.

I think, if I had to choose, I'd want it in an arm. See how nicely that turned out?

I am nowhere near the worst case scenario. I noticed mine while it was just a wee bit past a "pre-clinical" level--meaning it was barely detectable with the naked eye. Now, it is mostly reversed, and I'm still hopeful that we can get rid of this last little bit in my hand. Thank you for your prayers for this.

Tomorrow's post: Treatment.

Alternately Titled: What to Say to People Who Ask Why You're Wearing Pantyhose On Your Arm.