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: