Sarcoma Stories: A Mother's Day Tribute by Lyla Kiel
If you are reading this, sarcoma has impacted your life in some capacity. I wish it were under different circumstances, but through this twist of fate we are all connected. So, I’m going to be as transparently honest as possible with you all, because if this experience taught me anything, it’s how to be vulnerable. I’ll start by telling you a bit about my mom. Deborah Kiel epitomized unconditional love. She had the ability to be the light in a world that can be so dark. She was unwavering, and boy was she something. She was an incredible mother and wife. She was comfort. She was joy. She was feisty. She was wise. She was beautiful. She was powerful. She was heroically brave. Now, She is my guardian angel.
Our sarcoma story in short… went like this. It all started with a small bump on my mom’s left thigh. It was the fall of 2015, but I remember seeing that tiny bump for the first time like it was yesterday. Many dermatologist appointments later, what we thought was just a bruise had grown into a large, uncomfortable mass. It was supposed to have reabsorbed, but let me be the first to tell you, it did not. To preface, until this point my mother was the picture of perfect health. She was that woman that somehow never got sick no matter what germs her children or husband brought home. In January 2016, an orthopedic specialist diagnosed the bump as a hematoma. If you don’t know what a hematoma is (that was me), it is a formation of clotted blood that creates a solid swelling within tissue. According to the specialist, the solution was a simple two-step process. First, extract fluid from the mass to ease pressure, swelling, and pain. Then, rigorous physical therapy five days a week; which included massaging the mass, electric stimulation, and of course various stretches. About a month into the regimen, the mass was bigger than ever before.
We switched to a different orthopedic specialist and it was time for the follow-up appointment. I remember feeling giddy, hopeful, and dare I even say, excited for the new plan. Well, there was no new plan. Instead the new doctor explained that he was referring us two specialized doctors. Ugh more new doctors was my immediate thought. As my dad reached for the two business cards I caught a glimpse of the words “orthopedic oncologist.” I swear in that second all the oxygen in the room evaporated. Two weeks later, a biopsy confirmed our nightmare. The mass on my mom’s leg was an extra-skeletal osteosarcoma, an extremely rare and aggressive, high-grade, malignant tumor. The fight my mom was facing was going to be tough but, as cliché as it sounds, she was tougher. Her treatment plan consisted of two different chemotherapies and radiation.
At the time of diagnosis, I was twenty years old. I was still learning to take care of myself, much less help take care of a parent with a life threatening illness. I threw myself into her fight wholeheartedly. In our family, our motto was “it was our cancer.” She was not fighting it alone. My unwavering support for her spanned a spectrum. On one end, I was her nurse. I knew all her sick tells, I had read everything there was to know about her cancer, chemo, radiation, nutrition, and blood counts. On the other end we were 100% our mother-daughter duo. We would have dance parties in bed, cuddle, watch TV, laugh until we cried, gossip but also have the deepest talks, and of course nap (chemo and radiation fatigue is very real). It took some adjusting to get used to this new dynamic, but once we did it felt as if we were unstoppable.
After six rounds of chemotherapy and thirty days of radiation, a scan revealed that there was enough necrosis to operate. The surgery was successful and after a few more rounds of chemotherapy we celebrated her remission. It was a blissful six months. Our perspective on life had shifted so drastically that everything felt more vibrant and alive. We took advantage of opportunities, loved harder, felt more gratitude, and appreciated our new normal that came from fighting sarcoma and winning. In September 2017 her six-month scan revealed a recurrence in her left thigh and now in her lungs too. Our oncologist was in the preliminary stages of a clinical trial, and my mom was a perfect candidate. It felt like divine intervention. With newfound hope and vigor, we prepared to battle again. Unfortunately, this fight didn’t go our way. In February 2018, after the discovery of a new tumor nestled on left side of her heart, my mom was diagnosed as terminal. On the morning of March 23rd, 2018, heaven received a new angel, and I gained my guardian angel.
I hope that our story inspires you to hug a little tighter (when COVID allows), to not start grieving before you have to (and I wish that none of you have to), to write down memories, and most importantly, to live presently so that you can appreciate all the little things. Those little moments are so special. I never knew just how special they were until I was out of moments to enjoy with my mom.It has now been four years since her diagnosis and two years since she passed away. The journey that I was thrown into does not have an instruction manual (if anyone has one, please let me know because I’m wandering out here). I am now twenty-four and motherless. This being the case, my circle, my humans, help to hold me up. The gratitude I feel for them knows no bounds. We have learned together that the best support is to just be there. The grief process is incredibly unpredictable. Some days I just need a hug. Other days I need to cry and scream because the loss and the experiences are just too painful. Either way, I show up every day. That’s what my mom wanted for me, and that is what I want for myself. Thankfully, I have a support system that makes showing up possible.
Since it is Mother’s Day, I want to write a note to my mom. This is not easy for me. In fact, Mother’s Day is one of my hardest days of the year, but I know it is important to honor my mom’s memory beyond my daily effort.
I know Mothers day looks different for us, but like everything else, we got this.
Thank you for being mine. I was and still am the luckiest girl in the world to be your daughter. Thank you for fighting so hard, and for your will to live even when the thought of going forward was too much. Thank you for teaching me to rise up and meet situations with a sense of fearlessness. It is because of you that I know I can overcome my fear of not having you physically with me, and still find joy in my life. You are my forever inspiration. I miss you more than words could possibly even begin to describe, but I feel you everywhere. Like we always say, you are my everything and then some, and I love you more today than I did yesterday but not as much as tomorrow.
-Your littlest daughter