I had my long awaited appointment with the lymph specialist doctor this week. Shocker alert! I have been officially diagnosed with mild lymphedema.
The great (read: horrendous) news is that this is a life-long condition. I will be worried about my arm swelling for the REST OF MY LIFE. Thank you breast cancer. You are the gift that keeps on giving.
Here is how I understand it: Your lymph nodes move fluid appropriately around your body. I had 13 removed which seems like nothing when you think that our bodies house thousands of lymphs, but the ones that were removed were like the Grand Poohbahs of lymph nodes. Without them, my arm lacks the ability to properly filter fluid in and out of the arm and surrounding areas including my right breast, armpit, waist and scapula.
Acutely, this means that I have to wear a compression garment on my right arm and hand at all times I am awake. Hopefully at some point the compression sleeve mixed with physical therapy will have helped drain my arm enough that I only have to wear the sleeve when I am exercising or on an airplane.
What is guaranteed is that I will have to wear the sleeve and hand attachment (called a ‘gauntlet’ obvs) when exercising and flying for the rest of my days on earth. This is unfortunate for so many reasons three of which being that, A. It is uncomfortable, B. It is ugly and C. These compression garments are expensive and need to be replaced every 6 months. I did the math and if I live to be 85, I will have spent almost $8000 uninsured dollars on these eyesores.
I would also like to just say that I reject that one of the leading brands of these garments is called, LympheDivas. I’m sorry, but that is just insulting. No one wearing one of these compression garments has EVER felt like a ‘diva’. It should be called, ‘LympheLosers’. Attorney, trademark that stat!
Another super creepy side -effect has started to bother me this week too. My finger and toenails have started to feel sore. As I type this, every stroke of the keyboard is uncomfortable. It is a very odd and disconcerting feeling.
Along with the icky feeling is an actual physical change in my fingernails. I noticed a few weeks ago that my nails were discoloring about a quarter of the way up from the cuticle and a small indentation across the nail ran perpendicular to the length of each finger. Yesterday I looked more closely and saw that there were 2 parallel lines across the bottom of each nail.
Upon further research, I have found that these are like the rings on a tree trunk that denote age, but in my case, they are lines that denote cellular death from each chemo round.
Here is how I feel about this week in a single photo:
Crypt keeper- out 🎤⬇️
grancerblog 
So wish you were not dealing with this. Super love your photo shoot inspired by the box.
The whole lymph node removal diabolical left me with A LOT of strong emotions to process. Did you know that crankiness can be an indication of pending lymph ick? The irony of facing cancer, moving into a place with no evidence of disease, only to literally have my right arm taken off line for all intents and purposes is stark. Some things that has helped me the most are:
1. Finally getting sleeves that fit better, a challenge with my crazy small wrists in contrast to my once strong larger upper arms. Which pre-cancer regularly lifted 50# bags of flour etc in my chosen life as a baker. Better fit=less swelling problems.
2. Don’t be mad but The LympheDiva sleeves are what I ended up with. Best fit for me, same price. Plus people assume I have a really cool tattoo, rather than ask me, “What’s wrong with your arm?” Or “How did you hurt your arm?” Though I do wish I could be more incognito at times.
I buy their seconds, which are printing errors. Half price.
3. I get lymphatic massage every month. It is at this point more about taking care of myself emotionally. She is wonderful and always also works on my neck and right shoulder muscles that are overworked from compensating for my partially removed pectoral muscle. She reassures me when I feel paranoid about my swelling, and is very validating when it is more sloshy. Something my oncologist pretty much completely sucks at.
So, get a sleeve that fits right, that you don’t find ugly, and get massage.
Xo Iris
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Im due to have all my lymph nodes taken on my left side next month so I love reading your blog. I have 3 weekly treatment of taxol left and then I hopefully finished with chemo forever. The sleeve didn’t scare me as much at first. It it does now. I just figured that chemo has been so horrible that I would gladly wear the sleeve.
Your nails looks great. Mine started hurting really bad then turned brown and purple. Hopefully I won’t lose then but it’s not looking good. Lovely side effects.
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I’ve been dealing with lymphedema for 8 years. Just wanted to let you know that my insurance, bcbs, covers the garments (Medicare doesn’t because). I wasn’t very good about wearing my sleeve and gauntlet/glove this summer and now I’m back in therapy. I know it sucks to have to wear it, everything is more of a chore, who wants to eat with it on? and all the things that you do everyday. People think you are injured when they see the sleeve. Hopefully this part of breast cancer will be a minor issue compared to everything else.
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