My name is Katherine Bell and I’m 28 years old. When I was diagnosed with stage 2 appendix cancer, I was a healthy 27-year-old with no underlying risk conditions. One evening I started feeling cramping in my abdomen. I thought nothing of it until the intensity increased and I could barely sit upright or walk. I called my PCP and she recommended I go to the ER, maybe it was appendicitis. I was nervous to go to the ER as this was June 2020 and COVID cases were surging. My mom drove me in and, sure enough, it was appendicitis. I spent the night in the ER, got my appendix removed, and went home feeling much better.
A few weeks later I received a phone call from the surgeon who took out my appendix. I was driving and he asked me to pull over to the side of the road. “When we removed your appendix we found a tumor, it’s cancer, and we need to see you on Monday” (It was Friday.) Shocked and hysterical I called my parents who called my PCP to see if there was any way we could get an appointment sooner. She booked me an appointment with a specialist oncologist that very afternoon. The meeting was a blur, but what I remember was the conviction that I needed another surgery, I might need chemotherapy, I should consider fertility preservation, and that we did not want to see more cancer in my lymph nodes after the second surgery. I was lucky to be at Mass General Hospital, one of the best hospitals in the world, and to be speaking with an appendix cancer specialist. Specialists for this rare cancer are few and far between.
My surgery was scheduled for ~2 weeks later. The surgery entailed removing a foot of my colon (the appendix is attached to the colon, so this area had the highest chance of also having cancer) and surveying 12 lymph nodes to see if the cancer had spread. The goal was to not find any additional cancer. The surgery went smoothly but the recovery was rough. I was in the hospital for 5 days and was only allowed one visitor for a couple hours a day. My mom managed to extend that “couple hours” as long as she could. I continued to lose a lot of blood post-surgery and needed a blood transfusion on the third day. Drawing blood for labs became very painful and these happened every few hours to keep an eye on my counts. The nurses and staff took incredible care of me when I couldn’t walk or get myself to the bathroom. Even sitting up would cause me to be lightheaded. I tried to take care of myself a little too soon and fainted on my way to the bathroom, hitting my forehead and chipping my tooth. My hospital roommate yelled to the nurses in the hall who got me fixed up and put me back to bed. It was a long 5 days but eventually I was stable enough to go home.
Good news came the next week that all my lymph nodes came back clear. I was hopeful that with the surgery being a success, my appendix cancer saga would be ending. I met with my oncologist to go over the results, and while he was happy with the outcome, he strongly encouraged I do 6 months of chemotherapy. This would help lessen the odds of my cancer coming back. I really did not want to do chemotherapy. I was terrified of it and didn’t know how I would manage to live my life with the intensive treatments and unknown side effects. Not to mention going through chemotherapy during COVID. This caused a lot of stress and anxiety, but I eventually decided it was the best course of action.
Before starting chemotherapy, I met with a fertility doctor to discuss my options for fertility preservation. Chemo can have a negative effect on fertility and freezing eggs would help my chances of having kids in the future. It was an easy decision to go through the IVF process with my oncologists’ blessing. The hormone shots, blood work, ultrasounds, and egg retrieval were another physically and emotionally exhausting experience. My boyfriend and I went over to my PCPs house the first couple of nights so that she could teach and then supervise him giving the shots. Most patients are left to figure this out on their own (of course there are resources to teach you what to do), but we were so lucky that Caroline spent the time with us to ease the process. The hormones made me feel bloated, irritable, and emotional. When it became time for egg retrieval, I don’t remember much of the surgery but remember being immensely disappointed upon hearing they didn’t retrieve as many eggs as anticipated. Disappointed is an understatement. I was hysterical again. While not an unsuccessful process, it was not the outcome I was hoping for given the attrition from frozen egg to embryo, to implantation, to a full-term healthy baby. I wanted to do another round, but my oncologist recommended we forge ahead and start with chemo.
To start chemo, I needed to have a port placed in my chest. This port would allow nurses to access my blood stream quickly and safely. The procedure was quick and easy, but the healing of the port was painful. I felt like I had a 100 lb. brick stapled to my chest. I could not imagine using the port for chemo in just a few days but didn’t want to push off the chemo any longer. By mid-September, it was finally time to start.
Because we were still in the midst of COVID, I was not allowed any visitors during my appointments. On my first day, I was dropped off at the hospital and took myself to the infusion floor. I was scared to have my port accessed and numbed it with lidocaine that morning. The nurse was quick with accessing my port and it felt like a normal stick for drawing blood. I was then brought to the nurse who would administer my chemo. My team decided FOLFOX was the best type of chemo given my diagnosis. I was so lucky to have such a wonderful, competent, and easy to talk to nurse taking care of me. She administered nearly all my sessions. I’d receive the chemo for about 3 hours but spent closer to 6 hours at the hospital all together with check in, pre-labs, disconnect, and then connection to my slow-release chemo that I would take home with me. During the chemo sessions I’d nap, work on my laptop, scroll on my phone, and chat with the nurses. I never had any allergic reactions, and my sessions were mainly uneventful.
After each initial chemo session, I would take home a slow-release chemo pump. I was connected to this for another 48 hours. I’d carry the chemo around in a small bag. During those 48 hour the side effects really started to set in. I felt exhausted, nauseous, achy, weak, food tastes changed, my hands and feet would become numb, my hair started thinning, and I became extremely sensitive to cold (both to the touch and through eating and drinking.) These symptoms would last 3-4 days after I was disconnected from the pump. The cold sensitivity would almost disappear by the time I was headed back to my next session 10 days later. Still, I drank nothing colder than room temperature water and wore gloves most of the time for 6 months. My boyfriend learned how to flush and disconnect my port at home to save the extra trip to the hospital. Some days I wanted to go back to the hospital for extra fluids at disconnect, other days I was so glad he could disconnect it at home and allow me to get back in bed.
About halfway through my 6 months, and in the cold Boston winters, I didn’t know how I was going to continue more sessions. The side effects were ‘cumulative’ meaning that after each session they became more intense. While my team got my medications down to mitigate the side effects as much as possible, it was hard going into each appointment knowing what to expect, and maybe worse. But still, we all pushed forward, and I received my full dosage of chemo for the first 8 sessions. We lessened some of the drugs going into the final 4.
While treatment felt all consuming for those ~9 months, during that time I bought a house, continued working (~8 days out of every two weeks), enjoyed normal activities with friends & family, and most exciting of all, got engaged just two days before my last round of chemo. I’m so lucky to have received my diagnosis quickly and to have started treatment quickly as well. Many people with appendix cancer struggle to get the correct diagnosis and don’t have access to a specialist surgeon or oncologist.
Moving forward, I am now monitored closely through doctor visits and blood work every 3 months, scans every 6 months, and already have a clear colonoscopy behind me. The risk of recurrence is highest in the first five years, so I still feel like I’m walking on eggshells most days. I try and remind myself that everything has gone as well as it could have, and that the worst should be behind me.
Cheers to a healthy and happy 2021 and beyond and thank you to the incredible medical providers at Mass General’s Cancer Center. I’ll forever be indebted.