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How This Paralympian Learned to Love Her Body Through Rotationplasty and 26 Rounds of Chemo

I've been playing volleyball since I was in third grade. I made the varsity team my sophomore year and had my eyes set on playing in college. That dream of mine came true in 2014, my senior year, when I verbally committed to playing for Texas Lutheran University. I was in the middle of my first college tournament when things took a turn for the worse: I felt my knee pop and thought I'd pulled my meniscus. But I kept playing because I was a freshman and felt like I still had to prove myself.

 

The pain, however, kept getting worse. I kept it to myself for a while. But when it became just short of unbearable, I told my parents. Their reaction was similar to mine. I was playing college ball. I should just try to suck it up. In hindsight, I wasn't totally honest about my pain, so I kept on playing. Just to be safe, however, we did get an appointment with an orthopedic specialist in San Antonio. To start, they ran an X-ray and MRI and determined that I had a fractured femur. But the radiologist took a look at the scans and felt uneasy, and encouraged us to do more tests. For about three months, I was in a kind of in a limbo, doing test after test, but not getting any real answers.

When Fear Turned to Reality

By the time February rolled around, my pain shot through the roof. Doctors decided that, at this point, they needed to do a biopsy. Once those results came back, we finally knew what was going on and it confirmed our worst fear: I had cancer. On February 29, I was specifically diagnosed with Ewing's sarcoma, a rare form of the disease that attacks the bones or joints. The best plan of action in this scenario was amputation.

I remember my parents falling to the floor, sobbing uncontrollably after first hearing the news. My brother, who was overseas at the time, called in and did the same. I'd be lying if I said I wasn't terrified myself, but I've always had a positive outlook on life. So I looked to my parents that day and reassured them that everything was going to be okay. One way or the other, I was going to get through this. (Related: Surviving Cancer Led This Woman On a Quest to Find Wellness)

TBH, one of my first thoughts after hearing the news was that I might not be able to be active again or play volleyball—a sport that had been such an important part of my life. But my doctor—Valerae Lewis, an orthopedic surgeon at the University of Texas MD Anderson Cancer Center—was quick to put me at ease. She brought up the idea of doing a rotationplasty, a surgery in which the lower portion of the leg is rotated and reattached backward so that the ankle can function as a knee. This would allow me to play volleyball and maintain a lot of my mobility. Needless to say, moving forward with the procedure was a no-brainer for me.

Loving My Body Through It All

Before undergoing the surgery, I underwent eight rounds of chemotherapy to help shrink the tumor as much as possible. Three months later, the tumor was dead. In July of 2016, I had the 14-hour surgery. When I woke up, I knew my life had changed forever. But knowing that the tumor was out of my body did wonders for me mentally—it's what gave me the strength to get through the next six months.

My body changed drastically following my surgery. For starters, I had to come to terms with the fact I now had an ankle for a knee and that I'd have to relearn how to walk, how to be active, and how to be as close to normal as possible again. But from the moment I saw my new leg, I loved it. It was because of my procedure that I had a shot at fulfilling my dreams and leading life as I always wanted to—and for that, I couldn't be more grateful.

I also had to undergo an additional six months of chemo—18 rounds to be exact—to complete the treatment. During this time, I began losing my hair. Luckily, my parents helped me through that in the best way: Rather than making it a dreaded affair, they transformed it into a celebration. All my friends from college came and my dad shaved my head while everyone cheered us on. At the end of the day, losing my hair was just a small price to pay to make sure my body eventually became strong and healthy again.

Immediately after treatment, however, my body was weak, tired, and hardly recognizable. To top it all off, I started on steroids immediately after too. I went from being underweight to overweight, but I tried to maintain a positive mindset through it all. (Related: Women Are Turning to Exercise to Help Them Reclaim Their Bodies After Cancer)

That was really put to the test when I was fitted with a prosthetic after completing treatment. In my mind, I thought that I'd put it on and—boom—everything would go back to the way it was. Needless to say, it didn't work like that. Putting all of my weight on both legs was unbearably painful, so I had to start slow. The most difficult part was strengthening my ankle so it could bear the weight of my body. It took time, but I eventually got the hang of it. In March of 2017 (a little over a year after my initial diagnosis) I finally began walking again. I still have a pretty prominent limp, but I just call it my "pimp walk" and brush it off.

I know that for a lot of people, loving your body through so much change can be challenging. But for me, it just wasn't. Through it all, I felt it was so important to be grateful for the skin I was in because it was able to handle it all so well. I didn't think it was fair to be hard on my body and approach it with negativity after everything it helped me get through. And if I ever hoped to get where I wanted to be physically, I knew I had to practice self-love and be appreciative of my new beginning.

Becoming a Paralympian

Before my surgery, I saw Bethany Lumo, a Paralympian volleyball player in Sports Illustrated, and was instantly intrigued. The concept of the sport was the same, but you just played it sitting down. I knew it was something I could do. Heck, I knew I'd be good at it. So as I recovered after surgery, I had my eyes on one thing: becoming a Paralympian. I didn't how I was going to do it, but I made it my goal. (Related: I'm an Amputee and Trainer—But Didn't Step Foot In the Gym Until I Was 36)

I started by training and working out on my own, slowly rebuilding my strength. I lifted weights, did yoga, and even dabbled with CrossFit. During this time, I learned that one of the women on Team USA also has rotationplasty, so I reached out to her via Facebook without really expecting to hear back. Not only did she respond, but she guided me on how to land a tryout for the team.

 
 
 
 

 
 
 
 
 
 
 
 
 

Casually {killing} burpees; or burpees casually {killing} me #jilliansleap

A post shared by Jillian Williams (@jk_williams_07) on

Fast-forward to today, and I'm part of the U.S. Women's Sitting Volleyball team, which recently won second place in the World Paralympics. Currently, we're training to compete at the 2020 Summer Paralympics in Tokyo. I know that I'm lucky I had a chance to fulfill my dreams and had plenty of love and support to keep me going—but I also know there are many other young adults who aren't able to do the same. So, to do my part in giving back, I founded Live n Leap, a foundation that helps adolescent and young-adult patients with life-threatening illnesses. In the year that we've been running, we've handed out five Leaps including a trip to Hawaii, two Disney cruises, and a custom computer, and we're in the process of planning a wedding for another patient.

I hope that through my story, people realize that tomorrow is not always promised—so you have to make a difference with the time that you have today. Even if you have physical differences, you're capable of doing great things. Every goal is reachable; you just have to fight for it.

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