Lymphedema

Lymphedema = Swelling of the arm after a mastectomy and/or radiation. 

In a healthy human body, muscles contract and move fluid through the lymph nodes regularly, removing toxins and cleaning the tissue.  After a mastectomy that includes removal of the lymph nodes under the arm (for example), the system isn’t as efficient, and lymph can collect anywhere in the arm, swelling anywhere from the fingers to just below the shoulder.  This can also happen after radiation or chemotherapy.  Once it happens, it’s a chronic condition, so mastectomy patients try very hard to prevent it happening.

At my first visit to my oncologist post-surgery, I was given two pages of directions on avoiding stress or injury to my arm; either would increase my risk of developing lymphedema, which was already very high because of the large numbers of lymph nodes removed from my right armpit.

The list freaked me out.

Forbidden:

  • Wearing a watch, bracelet, or other jewelry;
  • Rings on my fingers (presumably I can still wear bells on my toes);
  • Carrying a purse;
  • Lifting groceries, shopping bags, or my children;
  • Manicures; and
  • Anything else that will stress my right arm or put it at risk (for even small cuts) in any way. 

Dangerous activities:

  • Mosquito bites;
  • Cutting food with knives;
  • Flying in an airplane; and even
  • Filing – a paper cut pierces the skin too.

This totally blew my mind.  I had survived 6 months of chemo, the removal of both my breasts, and now I was told that I couldn’t ever pick up my children with my right arm again?  What?  Why?

Well, I’ve done some reading since, and I now understand the importance. Once you develop lymphedema, you’ve got it forever, and it’s not any fun. 

Since I began to observe swelling in my arm on Sunday night, I’ve been so careful.  I haven’t carried so much as a load of laundry, and I’m using new gadgets for cutting apples, etc., for my children.  I wrap my arm in an ace bandage every morning and elevate it when I lie down at night.  I’m doing everything I can to prevent it, but it’s still starting to swell.

Last night, I put on my new lymphedema sleeve on to go to Kristen’s trunk show in Petroville, feeling very un-sexy but yet virtuous.  I was doing the right thing, again, trying to help heal and prevent this thing from hurting my body.  I even hid it (and my newly flat chest) under a white cami and big pink shirt and got ready for the party. 

This lasted about 15 minutes, as my hand and fingers began to swell uncomfortably even before we’d picked up UrbanMama.  I yanked the sleeve off and vowed to go back and get the matching glove as soon as it arrives in the store this week (it was backordered, so I have to wait).  Lovely.

Back to the ace bandage.

If you see it on me around town, will you just ignore it?  Please?

23 Responses to Lymphedema

  1. i’ll do that.

    but more importantly, i will turn my thoughts to hoping that you avoid this outcome.

    elevate, elevate, elevate!

  2. Imstell says:

    Ugh. Susan, I am so sorry you are running into every side effect under the sun. You and my mom. She has been suffering with lymphedema since her surgery also. Hers is under her arm & across her ribcage. She has to wear a compression shirt. She has had some success with lymphatic massage. Are you getting that too?

    I will say lots of prayers for reduced swelling and lessening of the lymphedema.

  3. bubandpie says:

    “presumably I can still wear bells on my toes”

    That is just – awesome. You are amazing, Susan.

  4. Stimey says:

    I had never even heard of this before. I’m so sorry. I’m sending good thoughts that it doesn’t get worse. Consider the bandages ignored. I’ll focus on your fuzzy head and sparkling personality instead.🙂

  5. chantillylace1979 says:

    I remember my mom going through this after her masectomy. It was a really scary time for our whole family.

    This was almost seven years ago now and she is doing well.

    You will, too.

    I pray for you every day.

    Hugs, Chantelle

  6. Jenster says:

    Were you told not to shave your underarm as well? My left underarm hasn’t seen a razor in coming up on 3 years. Thank goodness for Veet!

    I have a compression sleeve to wear when I fly. Lovely, aren’t they?

  7. mamma knows says:

    I used to fit people for compression stockings, sleeves, and gloves at my old job. They should be a flesh color so they really aren’t noticeable at all. From what I always heard from patients, they do wonders.

  8. Susan K says:

    Take care and hang in there! This too shall pass.

    Thinking of you.

  9. KillerBoob says:

    Remember how I bemoaned the loss of my lymph nodes? Now you truely truely understand why. I miss them far more than I’ll ever miss my breast!

    I’ve gotten used to wearing my sleeve while flying – even though it’s blasted hot! People do look at me a little funny sometimes wondering what it is. Oh well. The sleeve with the gauntlet (the glove) works wonders for me. I hope you get yours soon.

    Have a PT give you a lymphatic massage. they can also teach you and WD how to do it. It feels great and helps a ton!

  10. If it helps, I didn’t notice at all.

  11. Bon says:

    you’ll rock the bandage…and i do hope that the glove and maybe some of the massage that Killer Boob suggested help, too

    mostly i’m sorry for the insult to injury that this has to feel like. all the extras. rotten.

  12. Kimberly says:

    I had no idea. And honestly, you looked so beautiful that no one would have noticed a thing was wrong. I’m sorry that you were uncomfortable…one more reason why you should not have been cleaning up😉

    Thanks again for making the trip. It would not have been the same without you.

  13. Bubba's Sis says:

    Gosh, it just seems like if it isn’t one thing it’s something else, doesn’t it? You stay in my prayers, Sweetie.

  14. SuzyQatHome says:

    Ouch! Swelling hurts so badly. I have absolutely no advice here as I’ve never heard of this, so I’m sending all my sympathy and love instead. And lots of prayers for non-swollen arms and hands.

    Take it easy! I know how hard it must be with two little terrors running around – but I hope you’ll be able to keep that arm rested!

  15. Sweetie, you just make sure you’ve got those bells on your toes, and NO ONE will notice the sleeve. Promise.

    Swelling is SO uncomfortable… I’m sorry you’re having to go through all of this.

    But you’ve come SO far, Susan– I’m so proud of you!! I’m absolutely positive that you’ll beat this nasty after-effect, too.

    Lots of love to you and yours– CGF xoxo

  16. NYfriend says:

    How very frustrating. Oh and that list – f.r.u.s.t.r.a.t.i.n.g!

    I’m sure no one gave it a second thought. 🙂 You’re way too interesting to talk to for people’s minds to wander onto your attire.

    Thinking of you..

  17. Jenn says:

    I thought I heard bells.

    Your continued awesome attitude amazes me.

  18. […] I have been seeing a physical therapist also trained in lymphedema prevention (lymph/edema, simply, is swelling in the lymph system, just below the skin).  Once a week, she works on me, […]

  19. Mummycha says:

    I am so sorry to read about that annoying swelling as a consequence of the surgery.
    I hope it will decrease with time, as this is to be the case for my Mum and aunts.

    You are my heroine, I am so looking forward to meeting you in a few weeks!!

  20. I am surprised not to see the number one bain of my mothers existence. No gardening. And my mother being who she is ignores the advice and gardens and gets cuts from pruning roses.

    However she doesn’t hang out the laundry or do the dishes because of it. Sigh.

    I know YOU will follow the advice. Because you are WhyMommy and you are awesome.

  21. baasheep says:

    I found this http://www.lymphedivas.com/ on punkrockmommy’s blog. It’s a way of turning flesh bland-ages into something a llttle glittzier🙂

  22. peppermint t says:

    Bells on my toes … ha🙂

    Have you read anything about using proteolytic enzymes (brand names are Wobenzyme or Xymactive) to prevent lymphedema? Just a suggestion.

  23. […] mastectomy and the trouble I’m having with my arm, it unfortunately did not actually prevent lymphedema.  My arm swelled up shortly after my surgery, even before I started radiation.  After I’d […]

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