Johanna’s Story

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My name is Johanna, I was 33yrs old when I was diagnosed with soft tissue small cell sarcoma in early March of 2019. My husband of 10 years and I are parents to a rambunctious soon to be 5yr old sweet girl, who is on first-name basis with the rock star nurses and staff at Baylor All Saints Adolescent and Young Adult Oncology unit.

In late August of 2018, I pulled my left calf muscle during a HIIT workout. A couple of days later, I noticed a small lump on my left thigh. I concluded that I had also strained my thigh and paused my training sessions to allow my injuries time to heal. Over the next 4 months, the mass continued to grow on a nerve causing numbing and radiating burning pain down my whole left leg. I realized the pain went from uncomfortable to unbearable when I could no longer carry my sweet little girl. Other than the leg pain, I had no known symptoms or experienced any physical body changes like night sweats or unexplained weight gain/loss that could forewarn me of what was yet to come.

By January 2019, the pea-size lump had grown to a 6cm tumor, which the National Cancer Institute compares to the size of a chicken egg. My nurse practitioner ordered an MRI with contrast and the results revealed the mass could be an abscess or “possible sarcoma.” Reading those words jolted me and turned my world upside down. Frankly, I had absolutely no idea what “sarcoma” meant, I just had a gut feeling it would be devastating. A quick search revealed sarcoma meant cancer. Three weeks after my MRI, I had a successful surgery with clear margins that removed the tumor. The following week, my husband and I received the pathology report that confirmed the sarcoma diagnosis. I was distraught and in disbelief. There was no history of cancer on either side of my immediate or extended family.

We quickly assembled our own Avengers team of physicians and medical professionals who helped see us through the other side. A key element was to seek individual mental health for our little family. A child life specialist helped us to explain the situation and my physical changes to our young daughter.

Since my cancer was aggressive, my Avengers team treated the sarcoma with “nuclear bombs” of 9 cycles of in-patient intravenous chemotherapy immediately proceeded by 6 weeks of daily outpatient radiation. It was very challenging to navigate through the cancer treatment while caring for a young child. We are grateful to our family, friends and church family who helped us tremendously with child caring, providing meals, hosting blood drives and most importantly moral support. Three months after treatment, I’m thriving! My energy level has mostly recovered and I’m thrilled to be able to chase after my daughter again. I learned staying positive, celebrating small wins and living in gratitude helped tremendously through the journey. My new self is definitely a better version of my old self because it kicked cancer’s “bottom” as my 5 year old would say.