My name is Crystal, and I am a 31 year old MPNST sarcoma cancer survivor of a little over 2 years.

I was diagnosed with sarcoma cancer in 2022. What at first was thought to be a urinary retention issue wound up being a mass the size of a small cantaloupe pushing my pelvic area.

I remember being told about my cancer diagnoses. I remember getting the call at work and being told over the phone that I have cancer. My mind instantly blanked and the only words I could make out from the call was “chemo” and “be in touch soon”. 

The type of sarcoma cancer I have is MPNST which derived from my NF1. Prior to surgery I went through 2 out of 3 rounds of chemo. I had a bad reaction of bladder bleeding upon the middle of my second inpatient chemo treatment. After going through chemo, the CT scan showed that the mass size didn’t change, and I needed surgery ASAP. 

I was told by my then surgeon that I was going to need a permanent colostomy—I was devastated. As the surgery date got closer, I began to feel uneasy, even though the hospital I was receiving my treatment had a good reputation, I started to feel uncomfortable. 

It was then I researched and was able to see an oncologist who specialized in sarcoma. I quickly got an appointment and after meeting with him, I made the choice to switch care facilities. He confirmed the permanent colostomy. 

I was sent to other specialists who would also be part of my surgery team and it was then I learned that not only would I have a permanent colostomy, but also the bladder removal, permanent urostomy, partial hysterectomy, and Barbie butt surgery in order for me to have 100% clearance of the mass/cancer. 

My surgery was in October 27th 2022. It was one of the most difficult and mentally draining experiences of my life. Not only did I have to heal from the aggressive surgery, but also trying to learn about my new life as a double ostomate.

As of today, I have been cancer free for a little over two years! While every follow-up CT scan is still terrifying, I try to stay positive. I started an Instagram page to help raise sarcoma awareness and share my life as a double ostomate, with the hope of helping and inspiring others to know they’re not alone.

For those interested, please follow my Instagram page: @double.ostomy.gal