I am 39 years old and was diagnosed with appendix cancer at the age of 38. I was a healthy female with no underlying health issues and not taking any medications. In the beginning of March of 2020, I begin to feel bloating in my stomach, stomach pains, and a hernia. I went to see my primary care physician (PCP) and she sent me to a specialist to have the hernia removed. However, COVID had just shut down my city and my date was pushed out until May 2020. I immediately contacted my PCP for another suggestion, as I was put on a liquid diet and was in a lot of pain.
My city (Louisville, Kentucky) had just shut down and had the national guard present at all local hospitals. I went to the ER as my lungs started to hurt everytime I was breathing and the pain in my stomach was becoming unbearable. My brother drove me to ER and he had to wait out in his car for me. In the ER, they did a CT scan and saw that my appendix was inflamed and had mucus surrounding it. I will never forget the words the ER doctor uttered to me. He said, “Ma’am, your appendix is inflamed, has mucus around it and it looks like cancer. We are going to admit you to do a biopsy. I’m so sorry ma’am.” Tears began flowing down my face and I asked if my brother could come in and the doctor said no, as they were not allowing visitors due to COVID. I immediately called my brother and told him to go home as I was being admitted and it looks like it is cancer. I couldn’t stop crying on the phone to my brother. My brother attempted to calm me down and left the hospital. I then proceeded to call my father and let him know what was going on. My father was headed to the hospital too, but I had to tell him to stay home as he couldn’t be there either due to the restrictions. I spent 3 days in the hospital. Instead of doing a biopsy like I was told they were going to do, they did a colonoscopy. I was told that it was cancer and was given the name of a specialist who was local to me. I was discharged several hours later.
I met with the specialist who scheduled surgery for the hernia and he did a biopsy to confirm that the tumor was cancerous. He
also put in my chemo port while I was under. I woke up from surgery wondering what the heck was on my chest as it felt like I had a ton of bricks sitting on me. The nurse told me it was my chemo port and at that time, I knew I was in the fight for my life.
I began chemo (FOLFOX) and had to do 10 cycles of treatment. I experienced nausea, cold sensitivity, skin changes, extreme fatigue, neuropathy in my feet and hands, and “chemo brain”. After my 10 cycles of chemo was complete, I was scheduled for CRS surgery with HIPEC. I was extremely nervous, but ready to get this part over with. The day of my surgery I was so nervous and so was my dad as he was with me. Once they wheeled me back for surgery I woke up several hours later. I asked my nurse what time it was and she told me it was several hours after my surgery. I knew something wasn’t right as I was in the recovery room too soon. I woke up in my own room and my dad was there waiting on me. My dad told me that the surgeon didn’t do the complete surgery as he stated that I “had too much cancer in me” and I was deemed “inoperable.” My dad said that the surgeon wanted me to do more chemo… I was devastated, hurt, upset, crying, and all other emotions you could think of. I was so upset and felt defeated. I immediately sought a 2nd opinion in another city in Kentucky with an appendix cancer specialist from the ACPMP website.
I started chemo again, but this time I did FOLFIRI. I saw the other specialist and he stated that he would perform my surgery as he even said “I was too young to die.” I completed 6 cycles of FOLFIRI and was given another surgery date which happened to be on my birthday. The day of surgery I was very anxious as I didnt want the same thing happening that happened during my last scheduled surgery. My surgery lasted over 12 hours. I had to have a hysterectomy during surgery which I was aware would maybe be a possibility. I had to be given blood while I was under anesthesia. I spent 4 days in the ICU and then was transferred to a regular room. I had to have physical therapy to walk, and I had a NG tube twice (as I was having some complications while in the hospital). I spent a total of 25 days in the hospital.
My recovery time at home was rough as well, as I was trying to adjust to this new normal of being home. I had home health agency come out 3 times a week – I had a wound vac and an ileostomy bag. I had to adjust to living a different way, but I was blessed and grateful that my new surgeon went through with the complete surgery. I started chemo again a couple of months later and completed 6 cycles of FOLFIRI. I am now gearing up to have my reversal surgery for the ileostomy and have plans to return back to work in the fall 2021!