My story begins in Jan 2015 when I was diagnosed with Triple Negative Breast Cancer. I had a double mastectomy, chemo and about 5 surgeries before my first left arm developed lymphedema.
Oct 2015. I noticed my arm was swollen. My primary told me it was lymphedema and sent a referral in for physical therapy. I looked up lymphedema and watched a DIY video on lymphatic drainage. I did my pressure points and my own massage and by the time I got to a physical therapist who BARELY knew much about lymphedema, my swelling had gone down already. I went to a few PT appointments, she did lymphatic massage, sized me for a sleeve, and did not explain too much in-depth detail. I felt it was a waste of time to continue as my swelling had already gone down. So I went on my merry way.
In May of 2016 I went on a birthday trip to Vegas for the first time after my cancer battle. I had a blast in Las Vegas, came home thinking it was all the walking/partying I did in Vegas (what happens in Vegas, stays in Vegas) that caused my arm to swell up, my hand & fingers in particular. I did so much walking, 20,000 steps a day, I thought the swelling was from power walking through the crowds and swinging my arms downward during my sprints from place to place. I had no clue at all that I was supposed to wear compression garments prior to and after flying. I'm sure that small detail was in a pamphlet that was a part of the stack they give you when you are diagnosed with cancer but, at that time I wasn't concerned with reading the 500 billion pamphlets they give you, at that time, I just wanted to remove the cancer...
Anyhow my second left arm developed lymphedema was not as easy as the first as its at least 10-15 (on a good day) pound self is still inflamed. It’s been 2 1/2 years... lots of physical therapy appointments with 4 different physical therapists. I’ve tried around 6 different brands of garments to try to get one set that has worked and have settled with a custom made, uncovered by insurance, fun to get on every day, one piece garment with fingers. I’ve had several anxiety filled attempts at wrapping due to my main problem being my hotdog sized swollen fingers. I swear my first 2 wrappers were trying to make my hotdogs fall off… my third therapist was much better at finger wrapping. OH did I mention the sexy brown straight jacket Flexitouch machine…. Yes, I have one of them too and my two dogs almost ALWAYS come sit directly on top of me when I am suited up. Such a lovely sight and feeling.
I am doing my best trying to accept and deal with the daily challenges lymphedema brings. From the lovely shopping open arm trends to using a sexy medical triangle above my head in bed for elevation to not hesitating in a full room staff meeting to raising my arm without a question in mind. (All eyes on me, every stinkin time) The upside is; due to my constant trial and fail attempts at fluid reduction, my fluid seems to still be moving but it is getting harder to move.
I am trying to stay positive and use my arm as a open opportunity to educate those nosey people who ask about it. Whether they have time or not, I give them at the very least, the medical school 15 minute lymphedema blurb. Sometimes, when it is a stranger, and they ask, “Is that carpal tunnel?” I say, “No, it’s an adult twister injury!” just to break the sad face look when I say it is a side effect from cancer. Sometimes that answer scares them but most of the time the person and I have a good laugh.
I’m so excited, I JUST GOT referred to lymphatic surgeon, Dr Rockson, I seen him for the first time at the end of December and I will be a part of a medication trial for Stanford University. I am super excited and I have nothing to lose and so much to gain. I cannot wait at the possibility to possibly get to a Stage 0 again. That appointment was a little rough for me as when I walked away, I felt so guilty for complaining about my arm as others, (like my sister-in-law) did not get to live long enough to complain about the after cancer life. As I said, I am trying to live the best I can. I am a work in progress who is hell bent on living as an advocate with continue to share my experiences with hopes to help those who need helping. I know it sounds funny, but, I have so many blessings due to my cancer. One being my voice.