Renee Hill

May 2021

I’m Renee Hill and am an active, healthy 36-year-old. I was diagnosed with Stage IV mucinous adenocarcinoma (with signet cells) of the appendix on August 10, 2016. I was a healthy, active 31-year-old in the midst of training for my 25th half marathon. I have so many little memories from the summer of 2016 leading up to my diagnosis that didn’t mean a lot at the time but in looking back added up to something, something big. Running was kind of miserable, but it was hot and summer. I was getting full quickly and jokingly told my friends something was wrong with me because I couldn’t drink beer. We all laughed. I was often bloated and uncomfortable but wrote that off since I’m a woman. I finally decided I should talk to my doctor which led to an insane two weeks.

I saw my primary doctor on July 28, 2016, for my annual exam and let her know what was going on, she initially told me to take probiotics. She ended up ordering an ultrasound based on my pelvic exam, which was scheduled on August 2, and on August 2, she called me to tell me she was referring me to gynecologic oncologist who I met on August 5 and had an appointment that was so overwhelming and scary. Neither of my parents were in the state so a friend came along. My gynonc scheduled a CT for August 7 while also scheduling the surgery. At this point we knew she needed to go in but we didn’t know if there was malignancy. I was taken in for surgery on August 10 with them thinking I had ovarian cancer. Thankfully, my wonderful gynonc surgeon knew it was not ovarian once she had me open and called in another surgeon immediately. To this day I do not remember who told me I had cancer. I don’t remember what was said. I do remember sitting in the hospital bed trying to understand what was happening. They minimized that surgery, removing only my ovaries and appendix, knowing I would need a much more extensive surgery. There was a whirlwind of appointments that are a complete blur to me. I do remember fainting in one of them from information overload. My parents were with me at all the appointments and were able to take notes and ask questions while I was in a daze.

A wedding with my family, 4 weeks after diagnosis, September 2016

I started chemo four weeks after my initial surgery. I did five rounds of Folfox and then three rounds of Folfirinox in the fall of 2016. I worked through treatment other than the six-week FMLA surgical recovery, during which I did get in two rounds of chemo. I was incredibly lucky to have such a supportive boss and team. I received chemo every other Thursday and worked from home on those Fridays. I needed to work, both to keep my health insurance and income, and for my mental well-being. I did a really good job of trying to live as much of a normal life as I could that fall. I felt good most of my off weeks. I still traveled, still hung out with friends, and even made it to one University of Wisconsin football game (I’m a diehard Badger)! The chemo shrunk my tumors enough to make me a candidate for CRS/HIPEC and my surgery was scheduled for January 20, 2017, with Dr. Mogal at Froedtert/Medical College of Wisconsin.

My CRS/HIPEC was 12 hours, during which they removed my gallbladder, spleen, omentum, uterus, part of my colon, something with my intestines and lots of mucin and tumors. I don’t remember much from the days after surgery. I know I ended up in the surgical ICU for a few days. My initial recovery seemed to be going well and I went home after two weeks on February 2. Again, I don’t remember much of this time other than I basically lived on my couch and my parents were trying to force me to walk which pissed me off even though I knew I should be doing it. I ended up being readmitted on February 6th and was so mad to be back at the hospital. I remember arguing with my doctor to be able to go home. Went home again on February 13, this time spending less than 24 hours at home and ending up back in the hospital on February 14. Basically, I had an unknown infection that no one could figure out, including the infectious disease doctors and then had a reaction to some of the antibiotics. I finally went home for good on February 27, totaling five weeks in the hospital.

My recovery was slow and long. I never really believed them when they said it would take 3-6 months to feel back to normal. I figured I was young and healthy. Two months after surgery, on my 32nd birthday, I went back to work, only because I had run out of leave time. Going back to work was so incredibly difficult and I probably shouldn’t have gone back at 8 weeks from surgery. Again, incredibly grateful for an understanding and supportive work environment. I ended up laying on the floor under my desk during that first week back. I wasn’t driving myself to and from work as I didn’t want to waste my limited energy on the drive. I was only going in about 4 hours a day at first.

My niece and me, Pietrasanta, Italy, July 2017

In July 2017 I got to go to Italy for my niece’s first birthday and this will always, always be one of my favorite memories. She was born a month before I was diagnosed, and I truly feared her growing up without knowing me. I was still fairly weak, had a limited diet and was horribly underweight, but you can’t see any of that. This trip was pure joy. I eventually got back to my running and other activities and completed a half marathon in May of 2018, 15 months after my 12-hour CRS/HIPEC. It was the hardest, and slowest one I’ve ever one, but also the biggest accomplishment.

Celebrating my 36th birthday with my parents in the middle of chemo and the pandemic

I continued to be scanned quarterly for 2.5 years after my surgery as my surgeon decided that with my aggressive, advanced disease it was good to continue watching more frequently. I was basically back to my pre-cancer life. I went on trips, I hiked, I kayaked, I ran and left the worrying to my doctors as I was instructed. I wasn’t even someone who had bad scanxiety. In January of 2020, my three-year scans, a recurrence was found. My CEA was elevated for the first time in three years and there were two tiny tumors found on my liver. I was heartbroken. Happy new year to me. I started chemo again, this time Folfiri. I knew I was going to lose my hair; I knew I was going to feel like shit, I knew all that was coming so I insisted on still going to Florida to spend time with my brother and nieces before starting treatment. I am so so so glad I did that. I wouldn’t get to see them again for well over a year. Then I ended up going through chemo during the pandemic which was so different. I had never gone to an appointment let along spent a chemo day alone. My brother and niece video chatted with me every single round, from Italy. My niece didn’t know anything other than her auntie was at the doctor. Chemo by myself didn’t end up being that bad, it also didn’t really do anything other than make me miserable.

I had another surgery on June 30, 2020. While my CEA was going down with the chemo, my tumors were not shrinking. I had sworn I’d never have another surgery after my previous experience, but I fully trusted Dr. Mogal so agreed to another surgery. It ended up being a shorter surgery than expected and it went well. Even a year later I can’t believe how well I recovered from this surgery. I was back out kayaking five weeks later (shh, don’t tell my doctors I didn’t wait 6 weeks)!

August 2020

I am once again one year NED and enjoying my summer spending time with my nieces, kayaking with friends on the rivers and living my life!

August 10, 2021 is 5 years from my diagnosis and sometimes I have no idea how I got here. So much happened in that time and I’m so glad I was here for the weddings, the babies, the birthdays and the nothing days. I am surrounded by the best friends and family anyone could ask for. Family has flown in from across the country, and world, to be here for me. Friends, from near and far, have been by my side. I’m so grateful for the incredible care I received at Froedtert/Medical College of Wisconsin Cancer Center.

I am now a proud member of ACPMP’s Patient Advisory Council and am devoted to advocating for this disease and those affected by it.