My lymphedema management strategies
By Jill Edmondson
I was utterly dismayed when I suddenly developed secondary lymphedema in my left arm just after Christmas in 2017. I had a single mastectomy in October 2015. The breast cancer had migrated to the lymph nodes in my armpit; thus, a cluster of nodes was removed. Following the surgery, I slogged through a vigorous course of chemotherapy and radiation.
Through it all, a contingent of doctors, nurses, and other healthcare professionals warned me about lymphedema. I was educated about prevention strategies, knew the warning signs, and became aware of the risks it could present.
Accordingly, I was vigilant in my efforts to stave off lymphedema. I regularly did
preventative physiotherapy and decongestive massage. I kept the area clean and well moisturized. I avoided temperature extremes. I didn’t lean on my left arm. I slung my knapsack over my right shoulder. I wore loose clothing. I forfeited wearing bracelets, rings, and watches.
Nevertheless, lymphedema ambushed me 26 months after my mastectomy. Accepting that I had lymphedema was very difficult. I had done all the right things, and yet… After developing it, I learned as much as possible about managing and arresting lymphedema. I continued with physiotherapy and massage. I exercised regularly. I bought every type of compression garment in existence, including several that were custom-made. I also tried interferential current therapy, dry brushing, cold laser therapy, hyperbaric chamber, selenium, essential oils, vibration, compression wrapping, shock wave, hydrotherapy, pneumatic pump, K-tape, taro-diclofenac liquid, iLipo, and cupping. I’ve even had lymphaticovenous anastomosis (LVA) surgery – twice. Everything works… for five minutes. I can reduce the swelling, but almost instantly, the fluid starts building up again.
“There
is no healthier drug than creativity.”
- Nayyirah Waheed
Eventually, I decided to try a technique that helped me get through the worst days of cancer: comedy.
I have dabbled in stand-up comedy off and on for years. As the saying goes, laughter is the best medicine. But for me, it’s much more than that. Being able to laugh at something is a way of taking control. For instance, making jokes about my baldness during chemo was my way of saying: “Hey, cancer! You’re not the boss of me!” I decided to apply that mindset to lymphedema.
I’m not rich enough to afford daily massages, so I bought a portable massager for home use. It was somewhat helpful but awkward. I would try to hold the massager against the side of my upper arm or the back of my forearm.
Jill Edmondson is a “Jill of All Trades” in Toronto. She teaches law, fuses glass, and produces and performs stand-up and improv comedy. Jill is also the author of four mystery novels, including “Blood and Groom” and “Dead Light District.”
Comedy is not my only creative passion. I’m also an avid glass fuser, which is glass art formed in a kiln.
It was cumbersome, and I could never get consistent, appropriate pressure. I started thinking about the massager’s shape and size and wished I could find something long and narrow to strap onto my arm. Meanwhile, I was trying to develop a comedy routine about my lymphedema experience. And here’s how lymphedema and stand-up merged one night in front of a packed house at a pub in downtown Toronto:
n I bought two pink vibrators, pink because… run for the cure!
n First of all, what happened to good old-fashioned batteries? Modern vibrators have to be plugged in and charged. So, I save money on batteries, but spontaneity is killed. And what do I do if there’s a power failure?
n I keep the vibrators in the kitchen, not because a sink full of dirty dishes turns me on, but because that’s where there’s a plug I can reach.
n Convenient or not, it’s weird to see pink vibrators on my kitchen counter, right between the soda stream and the waffle iron.
n I get the vibrators all charged up and then light a few candles to set the mood.
n Then I Velcro the two vibrators onto my left arm to try and get the fluid moving.
n I listen to Barry White while my swollen arm tries to achieve sweet release.
n My left arm gets hot and tingly, while my right arm looks on with envy.
n After about an hour, my left arm is basking in the afterglow, while my right arm starts sulking.
n Then I take a shower and wonder what will happen decades from now when I die, and someone has to go through my stuff. When they find a vibrator in my kitchen, I hope they’ll think it’s a meat tenderizer, which, in a way, it is.
The crowd loved my set! They laughed the whole way through, particularly when I mimed strapping the vibrators onto my arm. That night was a victory for me: Jill-1, lymphedema-0.
Comedy is not my only creative passion. I’m also an avid glass fuser, which is glass art formed in a kiln. In my early days with lymphedema, I avoided glasswork. I was paranoid about cuts and the risk of infection. Then COVID came along, and everything shut down. When the post-pandemic world eventually started dawdling towards normalcy, I recognized that something was missing from my life.
In May of 2023, I decided to stop being afraid. By this time, I had been living with lymphedema for over five years. It was time to let lymphedema know who was in charge. I became a member at Glasstronomy Glass Studio in Markham, and I’ve been smiling ever since! I find true joy in the beauty of glass. I love the sound glass makes when I cut it. I love playing with textures. I love how the colours flow after being kilned.
As excited as I am to do glass fusing again, I’m not cavalier about lymphedema.
I engage my left hand as little as possible. I constantly check for scratches and nicks. I repeatedly wash my arm and hands. Additionally, I made a deliberate decision not to wear a sleeve the few hours a week that I’m at the studio. If a sliver of glass became embedded in my sleeve, that could be disastrous, especially since I might not even notice, given that lymphedema diminishes sensation in my left arm. But the compression garment goes back on when I put down my tools.
In the year since I re-embraced glass fusing, I’ve made almost one hundred pieces: bowls, vases, platters, sculptures, wall hangings, and jewellery. Every piece brings me pleasure, but also reminds me that even though glass is breakable, I am not. LP
