In February of 2019 I noticed a bruise on my left shoulder after getting out of the shower. It didn’t hurt but I was nervous about it so I scheduled an appointment with my primary care doctor. She told me that the bruise was there because I had recently gained weight and my purse was too heavy. I remember thinking that was a strange reason for a bruise but she was a doctor and I’m just a social worker, what did I know. In March of 2019 I got a massage and the massage therapist was very concerned about a bump that was now under the bruise. She was so worried that I became worried and made another appointment with my doctor. This time I went in and she said I had a lipoma and the bruise that never went away was still from my purse. I continued to tell her that I was really worried about it. She reluctantly agreed to make a referral to dermatology but was adamant that this was nothing.
I had to wait almost a month to see the dermatologist. When I finally got in to see her, she also stated that she believed it was a lipoma. She asked if I wanted to see a general surgeon to have it removed and I did so she gave me a referral to the surgeon. A few weeks later I went in to see the general surgeon and that is the first time I felt someone was actually concerned and taking this seriously. She asked all the cancer-related questions, “are you losing weight, night sweats, etc.” She referred me to get an ultrasound. Thankfully they got me in that day.
During the ultrasound I found out that my bump had blood flow. I could tell by their faces that this was not a good thing. I was then referred to get an MRI. They too were able to get me in quickly. I received a call the same evening of the MRI from the general surgeon. She said that they believe the tumor I have is malignant and they are referring me to Mayo. Even after this call I was unsure why I needed to go to Mayo but I knew it must be pretty bad. Within 2 weeks I was down in Rochester where they biopsied my tumor and on May 15th 2019 I was ultimately diagnosed with Ewing’s Sarcoma of the soft tissue at the age of 31. I learned that the tumor had a bruise over it because it was attached to a blood vessel-it was not due to the weight of my purse. After further testing they determined that the cancer was localized to my chest wall.
Things moved quickly after that. I began the regimen of 14 rounds of chemotherapy alternating between being inpatient for 2-3 days to taking home a chemo purse for a week. Funny how there is always a purse involved. After 7 rounds of chemo, I had surgery to remove the tumor on November 4, 2019. They got clear margins! I restarted chemo again a few weeks after that but each round got harder and harder. I was getting daily blood transfusions, many infections, mouth sores, hospital stays, and a horrible allergic reaction to platelets. After only 10 rounds I was told that I was done with treatment as my body could not handle anymore. My last chemo infusion was in December 2019.
If everything is still clear in November, I will officially be 5 years NED. Cancer has completely and utterly changed my life and the lives of my 3 girls. There is not a day that goes by that I don’t think about it and that I am not scared of all the what-ifs. I vividly remember being at my then 9th grader’s choir concert during which they showed a slideshow of pictures of the seniors graduating that year. I bawled like a baby because I didn’t know if I would ever see my daughter’s picture on the screen as a senior. If I had listened to my doctor and not kept advocating for myself, I don’t know that I would have. She turns 21 in 10 days.