Axillary web syndrome

When someone you know has breast cancer the first thing that pops into your head when you hear that they will be undergoing a mastectomy and chemotherapy (other than 'oh shit') is boob loss and hair loss.

Right?

I know this, because that is what popped into my head when I found out I had breast cancer.

Never ever did the words 'axillary web syndrome' come to my mind.

Let me tell you about this little known 'side effect' of mastectomy. Even though it's not well known, it is well documented and once you start researching it, you'll see lots of info on it.

And lots of pictures.

It looks something like this:

and this

Unfortunately after undergoing a double mastectomy, I now am lucky enough to experience axillary web syndrome first hand. Woohoo.

"Cording" - as it is referred to instead of the 'axillary web syndrome' official name is when the lymphatic system is disrupted, by the surgery. A (tennis ball size, remember) chunk is taken out of your armpit for the lymphnodes to be biopsied. When the lymph drainage 'veins' (for a lack of a better word) are cut they sometimes experience trauma and start getting rope like and start showing up through the skin. The arm feels tight and cannot be stretched any more without pain. Even holding a pen is painful (you can see why I haven't typed for a while, this is hurting me)

Today I went and saw a specialist in lymphatic drainage. She explained to me that lymph vessels are now cut, and they are trying to find a way back to each other. The ones that do make it, will feel tight and will need to manually be stretched (by her) in order for me to be able to move my arm properly again, and for the tightness and pain to go away. The ones that don't find a way back to each other, will eventually become brittle and when stretched and manually stimulated will 'snap' and break. Then, they will be reabsorbed by your body as lymphatic fluid.

How wild is this? I never knew this before.

So, on to my appointment today.

She has to manually stimulate the 'cords'. Ouch! If it sounds painful, it's because it is.

I have about 5 coming out from my armpit, all the way to my thumb.

(I know, I know, could I BE more disgusting right now?!)

Anyway - she grabs the first one and starts stretching the bejeeses out of it. It feels painful but I want it to get better so I bite my tongue. I am there for 40 minutes. After about 20 minutes of stretching one cord snapped. I have never ever felt anything like it before. No pain, but a weird 'snapping' sensation inside my body. It was accompanied by a 'snap' sound. Eery.

I looked up in shock and she laughed. Victory. She asked me to reach up, and immediately my range of motion had improved. WOW.

She worked on them a bit more, but I was in too much pain by the end of it and she let me rest. I am to go back tomorrow and we'll do it all again.

Doing this for the next few months will help me stretch these damn cords out and snap the ones that are brittle so I can stretch out my arm again.

'Cause I didn't have enough to worry about.