Learning to Love Lymphedema

img_0155-1Hi, my name is Mary Frances Kastelberg. I am 19 years old and started my journey with lymphedema 7 years ago. It all started one night in December, when I was most likely dancing in the kitchen to Billie Jean by Michael Jackson, or the new Justin Bieber song. My sister called me over and told me to stand in front of her. She told me that she thought that my right thigh looked bigger than my left. We grabbed a measuring tape from my mother’s sewing kit and sure enough, my right thigh was a whole three inches bigger than the left. I had noticed it was harder than before, but I thought that I was just gaining muscle. My mom however was worried, and the doctor’s appointments started. I started to get scared after my pediatrician did not know what was wrong.

Two doctors later, I was told it was a tumor, and twelve year old me was asking my mom if we could make a wig out of my own hair so I did not have to wear someone else’s. Two doctors, an MRI, and a CT scan after that, they decided that my leg was “definitely full of something” but that it was not cancer. I didn’t know how to feel as I sat in the sixth doctor’s office, my knobbly knees in front of me, my bare legs showing the scapes of a twelve year old who loved adventures. Did I actually want cancer? That would be better than what this doctor was saying. He told me that he thought I had a thing called lymphedema, and that there was no cure, and the list of restrictions ranged from taking hot showers all the way to making sure I no longer scraped my leg. I’d have it for the rest of my life and there was really nothing I could do.

img_5215We made an appointment with a lymphedema therapy center as soon as we could. From there, things did not look up. I was put in bandages at the end of August for intensive treatment. I hated it. I wouldn’t leave my house for a week and a half until finally my sister and mom convinced me to go to the mall with them. I’ll never forget my first time feeling like a freak in the freak show as I watched people of all ages stare as they walked past. The worst was seeing a young girl tug at her mom’s shirt and point as the bandages began to unravel, getting tangled as I scrambled to pick up the mess that was my life. I went back home and cried to my mom, I told her that I just wanted to die. She told me that we would get through this. That’s when I became angry. There was no “us”. It was me and I had to live with lymphedema alone. The therapist had stressed how hard it was that I not hurt my leg in any way, and I remember many nights being so angry and upset that I would dig my nails into my thigh, trying to break the skin. Looking back, I’m not sure why I intentionally tried to make my situation worse, I guess it was a way that I could put the pain into perspective.

A few months later, November, I got out of the shower one evening to find my foot and ankle extremely swollen. I was rushed to the ER, “Change Your Mind” by The Killers blaring into my ears as my head was pressed against the car window. After an IV, a nurse came in and told me that he was very sorry, but that the swelling was just part of my condition, and that there’s nothing they could do.

img_5427-1After a year of wearing pants, and crying with embarrassment anytime anyone asked what was wrong with my leg, my mindset began to change. I was tired of hiding and living inside myself. I began to take lymphedema as a challenge, instead of playing the helpless victim. I became frustrated with the limits that were set on me, and finally experienced a breaking point when a therapist told me that I would never be able to get my leg down past 26% larger than the left. That was all the motivation I needed to prove her wrong. I did another two weeks of intensive treatment to get my leg down to a volume difference of 16% larger. I couldn’t live in bandages however, so my leg filled up with fluid again. My relationship with my therapist got extremely tense, and I began to rely more on my MLD therapist for comfort, knowledge, and guidance. Dusty became my saving grace, she was someone who I could vent to, and who always had a positive outlook. I started to wear shorts, even tie­-dying a stocking. I realized that rather than being embarrassed, I could use my own experience with lymphedema to teach others.

Eventually I heard about Dr. Granzow through my lymphedema doctor in North Carolina. Following an evaluation in California, I created a Go Fund Me because insurance would not cover the Suction Assisted Protein Lipectomy, claiming the surgery was cosmetic. I raised $20,000 thanks to an amazing support system. December 16, 2015 I had the surgery that changed my life. The results had over a 100% reduction, breaking a record. Unfortunately, I also had a complication that had not been seen prior. Because my leg has no lymph nodes and my vessels stop at my foot, the content in my leg was almost solid, causing Dr. Granzow to be much more aggressive than usual. The surgery was a success, but because of the aggressive nature, my quadricep muscles atrophied and became as tough as concrete, limiting my range of motion in my knee to 40 degrees. (The average range of motion is 151 degrees.) I suffered from nerve pain for about 4 months, not sleeping a night through for 25 days. Physical therapy began in January, and I worked out three times a week to regain my range of motion until halfway through March.

Although my journey with lymphedema has been difficult, it has taught me so many different things, from what I hope to pursue as a career, to determination and acceptance. I now believe that I was given lymphedema for a reason, to teach and to help other people learn to love all parts of themselves.