Lymphe-loser

I went in for a lymphedema follow-up appointment this morning. This afternoon, we'll go for our pre-op consult with Mayfield at Ft. Carson. During the interim, we've been running errands like crazy and, look! I have just enough time before leaving to give you some very good news:

The lymphedema has reversed! Wooo hoooo hooooo hoooo hoooooooooooooooooooooo!

Praise God. And thank you for all your prayers. This is a very tender mercy, and it's a very sweet icing on top of a very fancy cake.

How do we know it has reversed? Let me back up a bit.

At my first appointment with Lil, a lymphedema specialist, she measured both arms. To do this, she made marks on my arm every 4 centimeters starting at my main hand knuckle and going all the way up to my shoulder.

Then, at each mark, she used her tape measure to take the circumference of my arm at that mark. She then uses these measurements to calculate the "volume" of my arm in mL.

Lil measured my left arm, the unaffected one, to use a baseline. My right arm started off about 300 mL bigger. That sounds like a lot, but spread over the whole appendage, it was barely detectable.

But I detected it. And treating it right away was pretty key to our success.

As for the treatment, I've described before the manual drainage and compression sleeves. At night, I slept in a special, super-puffy foam sleeve with a waffled texture that left my arm looking like a buffet item each morning.

Each time I've gone back to Lil, my arm was smaller and smaller until today, when it measured the same size as the left. And this is with my having not worn compression sleeves for most of the past week. (I'd been feeling a very sore nerve or tendon or something and began to think that perhaps I was squeezing it too much, so I stopped. . .)

So, hoorah! I now need to wear a sleeve a) when I work out and b) when I fly (on an airplane, when flying to tend to my business as a superhero, it's not necessary).

I am also still taping my first two fingers, which have a teensy bit of swelling left in them.

God Bless Lil and the wonderful work she does! I can tell from my internet reading that a lot of women don't have a resource like her--so knowledgeable, kind and helpful. I'm exceedingly thankful for her.

AND, as she made the marks on my arm today, she commented, "We'll start down here at this little Barbie Doll wrist." Extra credit goes to the person who is FIRST EVER to compare one of my body parts to a Barbie Doll's.

The Hollywood Sleeve

Lymphedema Part II: Treatment

There are two steps to reversing lymphedma in its early stages: compression and massage.

As for compression, the theory is simple enough: apply firm resistance to the affected area--in my case at first, an entire limb--and as your muscles expand and contract, they squeeze the lymph against the resistance and push it back up the lymphatic vessels.

So I got this sleeve on, you see, and a really tight glove, and every move I make against these garments is squeezing the lymph out of my arm.

I don't find the garments uncomfortable. I can get them on easily. They're not stylish, of course, but that's because I haven't gotten my hands on the catalog to order myself some leopard print versions. The only annoyance of them is that a day full of ordinary motion really tires my arm. The first few days I wore these garments, I had severe muscle cramping in my arm and hand just from cooking dinner. Stands to reason: there is resistance to every move I make now.

This also means my handwriting has gone to pot. Not that it had far to go. . .

As for massage: The lymphatic vessels are punctuated by one-way valves, which create a kind of suction. A few times a day, I press on the lymph nodes in my neck, right at my collar bone, to clear them out. Once they're empty, they create a suction in the vessels they're connected to. I help my body by gently rubbing my arm from the elbow up to the shoulder several times. This empties those vessels. Then I rub from the wrist up to the shoulder. Then from the fingers on up.

I was doubtful this actually accomplished anything. But I did it often because I'm pretty interested in reversing the condition. Then I took a plane ride down to Florida and felt my arm fill up as the plane descended to sea level. I started emptying and massaging like crazy and after a few minutes of it, felt a decided relief. So now I do it often because I know it works.

And the results? My right arm is now noticeably smaller than my left! I'm not sure what we're squeezing out anymore, but I think it's more than just lymph. More details about results are coming in Part III. But as I've said, the condition is mostly reversed and my arm is looking great.

So great, in fact, that I'm surprised Hollywood has not discovered compression sleeves. These actresses could be squeezing a good 100 - 200 mL of fluid out of their arms right before going onto the red carpet.

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.

Wellness Update

I'm wearing a pressure sleeve and a pressure glove, so typing is not all that easy.

Or, I could say that typing is easy, and making typo's, even moreso. All this makes me given to brevity.

My follow-up with the lymphedema therapist is on Monday, whence we'll see whether I'm responding to the pressure-sleeve-therapy. I also "manually drain" my lymphatic system. Who even knows anything about the lymphatic system let alone that one could "manually drain" it?

I have 7 radiations left to go, and my skin, this week, has finally screamed in protest. I'm glad I don't have a nerve connected to that chest wall, because it's now covered in a 2nd degree--bordering on 3rd degree--burn.

After the 3:30 treatment, it's pretty uncomfortable (from the bit that I can feel). But by morning, it's converted to mostly a tan. In all, I'm pretty thankful the skin has been responding so well. I'm thankful, too, for the lydocaine-aloe gel that I can apply liberally.

On the other hand, the rest of my body is pretty aware that a chunk of it is having the cancer burned out of it. And it's working really hard to restore the damage. I'm so exhausted. All the time. I'm sleeping about 10 hours a day, and still feel like I could take a nap at any given moment.

Ah, well. Only 7 more treatments.