Rosa M. Rodriguez

I'm Rosa M Rodriguez. I'm a Patient Advocate on giving Awareness on Colorectal & Stomach Cancer and on FAP Syndrome. Stands for Familial Adenomatous Polyposis Syndrome. I'm also an Advocate with Fight CRC. I'm a Cancer Survivor on both Colon & Stomach Cancer, with an inherited Rare Genetic Disorder that runs in my Family. My Great-Grandmother had, my Grandfather and my Mother all had it, and they all passed away from Colorectal and Rectal Cancer from FAP Syndrome. My Great-Grandmother and my Mom both passed away of 29 yrs old. My Grandfather was 56 yrs old at the time he passed away. Lots of my Mom's Family like Uncles, Cousins, and Nephews have FAP Syndrome and related illnesses of it, some of her Cousins have passed away through the yrs.
My journey started 2 yrs after my Mom passed, I was by then 7 yrs old, yr 1992... When my Mom passed, I was 5 yrs old back in 1990. She had her Rectum sewed, had an ileostomy bag, was dealing with Colorectal & Rectal Cancer and had a Brain Tumor all together it was hard for her. She was given Chemo & Radiation to help her with her Cancer, it was too late for her, they were only giving her 6 months to live... The Chemo and Radiation helped her live bypass a whole yr more with us... The Cancer had already spread to her Liver and was too late for her to be saved. Her Cancer got aggressive when she was 26 yrs old pregnant of my Brother, but Doctors couldn't do nothing to her until she had him, that's when they found out she had something in her Intestines... My Grandfather was fighting Colorectal Cancer at the sametime as my Mom in the late 80s. From what I know the story of my Grandfather, was that he suffer from it his whole life dealing with Intestinal problems and very bad pain, that led him to have FAP Syndrome. My Grandfather didn't know about it until in the 80s. When his Brother of my Grandfather was suffering of Intestinal problems as well, and had gone to the Doctors here in California, that they informed him about Colorectal Cancer. And Doctors asked him if he had any siblings to bring them forward to get tested asap as it was an inherited illness. It was my Grandfather that went, but it was too late back then, Doctors couldn't do much for him anymore. If my Grandfather would of gone a yr earlier everything would of been different for him... In Mexico's border Mexicali the Doctors or Hospitals weren't equipped like here in Los Angeles, and my Grandfather started to get treated here in Los Angeles, California. This was around the time my Parents meet, my Parents meet around 1983 and the following yr I was born. Ileostomy were a thing back then, so all of them had ileostomy bag my Great- Uncle, my Grandfather and my Mother. She passed in 1990 Aug. & my Grandfather in Sept 1990 as well. My Grandfather's Brother still lives and is 81 now, struggling but stable now.
I started to get treated with scopes at 7 yrs old back in 1992, monitoring me in that way and my younger Brother as well for yrs Doctors did. Once I was 11 yrs old, my Father took my Brother and Me for Genetic Testing and the test came back positive to my Mom's Genes 85%. So that meant we had her illness FAP Syndrome. The G.I. Doctor had sent us to do Genetic Testing, it was my Brother, my Dad, myself and with records of my Mom's Genetic Testing that were on file with Kaiser Hospital everything were compared with, and thats how we found out... The Genetic Tests were positive so my planning of my Total Proctocolectomy with J-pouch laparoscopic bikini cut surgery was set but my G.I. Pediatric Doctor Gilbert, and Dr. Earl Downey Jr., MD is a Pediatric Surgeon were just waiting for symptoms to show, and sure enough the time came when I was 12 yrs old, feeling sick with non stop diarrhea one of the symptoms for like a whole week, I had it... I was in Jr. High School feeling very sick from my abdomen, my Father was concerned and took me in to get checked. My G.I. Doctor said it was time, and by then I had more than 200 hundred Polyps on my Large Intestine. My Brother was 2 yrs younger with less Polyps than me, my Doctor had said... I was graduating from Jr. High School, but wasn't allowed to go to the ceremony of graduation. I was in the hospital ready for surgery, everything was planned with months in advance being in "tracks was going to be out for 4 months of vacations". I had surgery in May 14, 1998, but was hospitalized for 2 weeks and so... Went home and my life with no Colon started since then at the age of 13 yrs old. It was a very hard surgery to a girl, my Doctor said and this is coming from my General Surgeon, that "girls or women" our bodies have curves and that affects us during the time that they're performing surgery on us. Which that meant that I was going to go through more pain than my Brother, because of my curves. When it's a straight Body like "boy or man" it's better for them to work with you, but when you're a "girl or woman" it's very difficult and painful for us, so it's going to hurt us more being a "girl or woman"... With time I got used to things as week passed by, but I struggled yes of pain but my Family- my 2 Brothers, and Parents were a great system support for me, but took me 2 yrs to feel good from surgery. My eating habits changed and my diet did as well. My Brother had the same surgery 2 yrs after me at 13 yrs old as well... My Father had experience a lot with my Mom's illness and us two, but it only made us stronger and learned from a Rare Genetic Disorder in the Family. By the time 5 yrs came from surgery, I was cleared and the G.I. Doctor said I was out of danger... But differently the first 2 yrs are the critical ones. Doctors loved us, because they're always learning from us... My Father did remarried in 1993, my Mom as I call her like that, raised my Brother and me, she had a Son from her previous relationship, so we became a blended family of five. I did good with the yrs and so did my Brother as well with our illness.
I got pregnant at 23 yrs old, my pregnancy was hard and very high risk. My son caused a blockage on my Small Intestine, I had an obstruction. Emergency ileostomy surgery was performed while being hospitalized for abdominal pain, my son was 6 months into my pregnancy, and was gonna be a premature baby. He was already very low, any moment he would of been born at the time it was 2008 and I was 23 yrs old. My Primary Doctor had put me on bed rest at 6 months and I had to stop working as well... My G.I. Doctor had diagnosed me at 22 yrs old, with Stomach Cancer with Polyps inside the Stomach just in Aug 2007, a yr before my pregnancy... I knew I had the Polyps growing inside me again. When being hospitalized I informed the Doctor on site but they didn't listen to me, taught I was crazy and wrong. I went in as Emergency and the Doctors thought I was suffering of Gallbladder problems, not of Stomach Cancer... During the stay nobody wanted to perform surgery on me because of my pregnancy, I was hospitalized for days there, but the hospital found a Doctor that could perform surgery on me. I had a surgery planned to remove the Gallbladder and the baby would stay in until it was time... I went for surgery, while being 6 months pregnant. During the surgery the Surgeon noticed on site that it wasn't the Gallbladder, that the Gallbladder was good, but my Small Intestine was about to pop and there was a hole on the Small Intestine... The ileostomy was performed to save me and fix the problem, Surgeon decided to leave the baby in, inwhich the baby was in an area he could be touched said the Surgeon, and help me because my Small Intestine was about to explode... I only wanted to rest after surgery and had be put in a room for recovery after surgery, but in the delivery area still. I had visits that nite but I had asked the nurse to remove the belt that was tracking the baby's heartbeat, it was hurting me, so it was removed. When the nurse went to give her round of checking me and the baby, when she was checking the baby, she noticed no heart beating and I was trying to sleep at 11 p.m. I was woken up to the nurse feeling worried and I couldn't sleep anymore because of everything going on, an ultrasound was performed and the Doctor was called in to do another one... The Doctor's perform another ultrasound they discovered that the baby had passed away, and I was looking at the screen. I understood what was happening. The baby had passed away, and I was induced into labor.
My son was a stillborn 24 hrs after my surgery, he didn't make it, it was June 12, 2008... I went through 5 hours in labor and had my son delivered vaginally, spend time with my Son and my Family, they where all there to meet him and there for me. My Father and Doctor taught it was good idea to get me out of the delivery area and put on a normal floor room for my well being "mentally", I remember waking up to them talking at the door away from me. In that time I didn't know what had happened, so the ileostomy bag I discovered on my own one day being alone 2 weeks after I had surgery and delivery of my Son, and I was up for a big surprise and mad with myself yes. My Parents wanted to avoid me getting more hurt, so I was sedated I guess for like a week or on morphine for me to relax and for pain as well, and put asleep when that time happened after the baby passed that it didn't give me time to know anything about the ileostomy bag... Someone from the Doctor's payed me a visit one day when I was alone in my room, and told me that they had messed up, and that they should have checked my medical records like I had suggested that they had in the hospital of me, and that they would have understood what was going on... They would have understood everything but that he said sorry Ms. Rodriguez, and I felt very bad for myself, but I couldn't bring back my Son anymore... I couldn't reverse everything they had done to me, so there was nothing there too be said anymore. Was hospitalized for 5 weeks in total...