Lymph Living

Welcome to my blog

I didn’t expect my life to change because of something as small as a bike ride on an ordinary afternoon- but that moment is when everything shifted.

Welcome to my blog. I’m new to this space, and my goal is to share my journey with lymphedema honestly and consistently. Down the road, I’ll add product reviews and tools that have helped me, but today I just want to introduce myself and share my story in hopes that it resonates. If it does, I’d truly love to hear from you.

I was diagnosed with Breast Cancer a little over two years ago. At the time, I was already planning to undergo a double mastectomy. Before moving forward, my plastic surgeon decided to biopsy my sentinel lymph nodes.

He explained that if cancer was found in the lymph nodes, I would need chemotherapy and radiation first. The concern was that those treatments can affect healing after surgery and may also impact cosmetic outcomes. Unfortunately, both sentinel nodes were positive for cancer.

I had two sentinel nodes removed, though some people have more. Because cancer was found there, I then needed an axillary lymph node dissection. The axillary lymph nodes are small, bean-shaped immune system glands in the armpit that filter lymph fluid from the arm, chest wall, and breast. In my case, about 14 additional nodes were removed. Cancer was found in two more nodes, but it appeared to stop there.

Not long after surgery, I began noticing intermittent swelling. I live at higher elevation, and during hikes I would feel my hand and arm start to swell as I got closer to the summit. I learned to quickly use the exercises and manual massage techniques I had been taught in physical therapy, and the swelling would go back down. Elevation was clearly a trigger for what I was developing: Lymphedema.

Eventually, I was fitted with a compression sleeve and glove through physical therapy. It was lightweight, and I wore it during exercise. Things stayed manageable for a while.

Then one day, I went mountain biking with my teenage son. It was an 80-degree day, hotter than I usually tolerate, but he rarely agrees to ride with me, so I made an exception. After we got home, he asked me to give him a haircut.

I looked down and saw that my hand and arm were significantly swollen. The strange part was that I hadn’t even felt it happening.

I immediately went into everything I had been taught—manual drainage techniques, exercises, elevation. My physical therapist was out of town, and in my small town there was no one else available. I spent hours trying to get the swelling down, but nothing worked.

I called the on-call oncologist, who sent me to the ER to rule out a blood clot. Thankfully, it wasn’t a clot, but there was also nothing they could do. And of course, it was Friday of Labor Day weekend. There was no specialty care available for days.

By the time I was finally able to see a lymphedema specialist again, the swelling had not fully resolved. That was the day my lymphedema became permanent.

That is my lymphedema origin story. Can you relate? What is your origin story?