Lymphedema- The Gift That Keeps on Giving

About a month and a half ago, I noticed that my right thumb was swollen. Hmmmm, that is odd. I definitely did not injure it. Maybe it will be back to normal tomorrow.

It wasn’t. It started to hurt it was so swollen. I was compensating for all kinds of opposable thumb activities. At a loss of what could be going on, I decided to schedule an appointment with my lymph doctor. Maybe, since it is my right hand (the side I had my axillary surgery on- I had 13 lymph nodes removed), it could be lymphedema related?

The doc clearly sees that my thumb is very swollen. She measured my arm against my last measurements and it hadn’t changed. She said it is possible that my swollen thumb is lymph related, but in her practice, she has never seen it manifest in the thumb only. We decide to try an Advil regimen for a week. Doesn’t work.

She decides to send me back to be assessed by the physical therapists.

I am so embarrassed by my single thumb affliction that I pretend it is not happening and do nothing for a week or two. In that time, I start feeling my wrist area ache. Then my forearm. Eventually, my upper arm, at least what I can feel of it (remember my armpit extending to my upper arm is still numb from surgery where all my nerve endings were compromised).

Right hand, normal. Left hand (with wrapped finger), is swollen as you can see.
This is not great. I begrudgingly make the physical therapy appointment.
Which brings us to the present. I saw my physical therapist today and guess what?! I have worse lymphedema now than when I did after my axillary node dissection! Fantastico!!!

You may wonder how this is assessed. The therapist will measure the circumference of your arm every 20 millimeters from shoulder to fingers. They will compare these measurements to your ‘good arm’ or if you have had measurements taken on the affected arm, they will measure against that to see progression or regression.

In most cases, you can see the difference with the bare eye. And as the patient, you can absolutely feel it. Swelling causes a lack of mobility, discomfort and in some cases, pain.

The only way to reduce swelling from lymphedema is physical therapy to manually drain the excess fluid that has amassed. They way this is achieved is to have a skilled therapist assess your issue and begin the massage/manipulation accordingly. It feels like a very light massage in a linear motion.

In my case, she starts by massaging above my clavicle which is apparently an important lymph crossroads. Then she moves to another lymph cluster near my groin. This always seems rather out of the way, but I guess in order to have somewhere for the fluids to go, you need to have all systems a-go.

From there, the manipulation begins on my arm. The arm is held up so that gravity can help drain the excess fluid that has gathered at the end of the arm/hand.

Rare and mysterious medical situations are my specialty, but this one is a real doozy. Not because it is a serious medical problem, but because it is life-long and will require constant monitoring and potentially, intermittent physical therapy. I also have to wear a compression garnet on my arm whenever I exercise or fly.

What I have learned from this bout, is that there is no rhyme or reason. I didn’t do anything different to warrant a flare. It happened because my body lacks lymphs and got to a inexplainable place where it needed more that weren’t available.

Someone asked me yesterday how I was physically feeling these days. I replied that I actually feel really well. Pretty much like I did before cancer. I was so excited to be able to say this out loud. It felt like maybe cancer-life was behind me.

But cancer-life will never be behind me. It will walk alongside me as I live my life. I have to find a way to welcome my little side-kick instead of loathe her. Especially now that cancer-life has reminded me with a big ‘thumbs up’ that she ain’t going anywhere.


2 Comments Add yours

  1. Iridacea says:

    It is a bummer that your thumb blew up.
    The lymphatic clearcut has been my most irritating long term leftover from treatments. Way more emotional than it seems like it ought to be. Generally I just feel really really pissed whenever I get swelling. It is a work in progress.
    On the bright side your new hair looks fantastico, and the general upswing in health is wonderful.
    Take care-
    Love from the woefully wet coast of Oregon…


  2. Lisa says:

    Thanks for this article! I know where you come from. I had a recurrence of breast cancer, which left me with with one less boob and twenty fewer lymph nodes. Shortly after surgery, lymphedema set in my upper arm. Even with therapy and compression garments, my thumb is swelling also.


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