I was diagnosed with Undifferentiated-Unspecified Pelvic Sarcoma at the age of 12, after being on my period on July 11, 2009 until October, almost 120 days straight. Literally bleeding to death. On October 19, 2009, they went in to do a ’D&C’ and discovered a softball size tumor on my uterus, golf ball size tumors on my ovaries and smaller ones other places. They then did an emergency hysterectomy to remove all the tumors and while doing that, they cut my bowels causing me to go septic and within 2 hours of being in recovery my fever spiked to 103+ so they take me back to surgery to see what happened and they placed 2 infection drain tubes to get the infection out and then had to go in again for a reason i can’t remember. So, after all that, I have a huge gaping hole in my abdomen that has to be wound packed. (Remember, im only 12 when all tnis is happening.) One of the nurses at UAB hospital in Birmingham, Alabama, was ridiculously rude to me, my mom and my therapist from Children’s Hospital, telling me her 4 year old grandkid could take the pain I was feeling better than how I was taking the pain. Anyway, my mom ended up going off on her and told her not to come through my hospital room door and that she needed to tell my mom how to unpack/repack my hip to hip incision. So my mom did it until it was healed. That took almost 2 months or more.
So, since they cut my bowels I had a bowel obstruction that causes so many issues I was in the hospital for almost FOUR months. I wasn’t able to eat for 60 days, had to have TPN and lipids to keep me alive bc I couldn’t eat or else I would throw it up, they also put a drain tube through my nose pulling everything out from my stomach. (They had to replace the tube several times bc i would end up throwing it up or some other reasons, i barely remember.) They eneded up doing a 14 hour emergency surgery to fix their fuck ups, and i come out of surgeey with a colostomy bag. No, its not reversible, its permanent.
After all the surgeries, I started chemo. I was on Doxorubicin and two other very strong chemotherapy treatments. They made me so sick. I did that for a year and about 6 months into chemo, I started radiation. I did 6 weeks, 5 days a week, of radiation. The radiation damaged my kidneys and bladder to the point I’m in End Stage Renal failure.
So years of dealing with ureter stints surgeries every 3-4 months for about 4 years, the doctors finally decided to go in and put a ileal conduit (urostomy bag) on july of 2017. While doing that, somehow a staple ended up lodged somewhere in my kidneys or ureters. (We had no idea at the time).
By the time I was 20 I had, had about 40+ surgeries, 4 or 5 of them being MAJOR surgeries. Over 8 years of surgeries, hospitals stays, extended hospital stays, and at home treatment at one point.
All that is wrong with me now is that my bladder is in the doctor’s words, (essentially turning to concrete) and my kidneys are damaged beyond any type of repair. On August 3rd, 2020 I went to the ER for severe abdominal pain and turned out I had a 12mm/half inch kidney stone PLUS a CALCIFIED STAPLE they removed from me through my urostomy bag, that had to have been there since 2017, when I got the urostomy bag.
Shit has been wild.
And now I’ve been diagnosed with PTSD, anxiety, depression, insomnia, and personality disorder. Me being so young dealing with all of this was so hard. I self harmed, tried to OD all bc i wanted the pain to stop and another part of me wanted to be fucking normal and able to do things kids my age were doing but I couldn’t, unless I wanted to chance getting sick bc my immune system is shit. And I just wanted to look normal. Im so self conscious of my body it has really made me isolate myself so I wouldn’t have to see me and I didn’t have to see them.
I dont know why I’m telling you all, all of of this but I feel like my story should be heard and at 23, im finally, mentally able to talk about it. All that I went through has made me hate myself but im getting better now.
My name is Briana and im a survivor.