Amanda Fee
You never know when life is going to throw you a curve ball. You can plan for something to happen down to the dotted line, but a simple phone call can change your whole perspective on life.
In August 2017, my mother went to a doctor, complaining about lower back pain. After tests and a scan later, it turned out her appendix had ruptured and needed to be taken out. As the doctors started her procedure to remove the appendix, they looked at her with concern, as they noticed small dark specs around her gallbladder and intestines. We were told my mother had PMP cancer (Pseudomyxoma peritonei), which is a slow growing cancer that can begin with tumors in the appendix but can spread to other organs.
At the time of all this, I was in a different place, quite literally. I was studying in Ireland, about to submit my master’s thesis, focusing on the next steps of my career. When I got the call that my mother had been diagnosed with a rare cancer, I broke down. I knew my mom was terrified, and the only thing I could do was to wait for my flight home to give her a hug. Not being there was one of the hardest moments of my life. I’m very much used to being involved in every aspect of my family and I felt like I couldn’thelp her. By the time I got home to the US, my mother had already begun chemotherapy. It was hard to go through the winter holiday months and to watch her lose her hair and suffer from the taxing treatments. Right after the holidays, my mother went into her surgery. This invasive treatment consisted of removing all tumors and a high intensity chemo wash. After a few days in the ICU, and a week in the hospital, she got the OK to come home. We were delighted about the news!
Except, it was around that time when she started having more issues, resulting in another emergency trip to the ER. Her doctor told us her colon had ruptured and they had to go back in and fix it. We were told to say our final goodbyes, knowing that the chances of her survival were low, due to her invasive surgery the week before. I remember my father and I looking at each other in pure disbelief. How did we go from having her home to her potential death? After what felt like the longest three hours of my life, we got the news that the doctor was able to repair the damage. From there, we started my mother’s journey towards recovery with the support of an amazing community of family and friends.
My best advice for families is to know the risks, understand your biological health, and surround yourself with a supportive community. Every six months we’re biting our nails when my mother goes through a routine check-up to see if the cancer comes back. My siblings and I now get regular checkups and specifically test for this type of cancer with appendix specialists. When my mother was going through her treatments, our community of friends and family kept our energy and spirits lifted. Even now, after her treatments, my mom finds comfort in online communities of people with the same cancer, all sharing their stories.
I share this information because this time of my life was unlike anything I’d ever imagine experiencing and I feel like it aged me by 20 years. I had to really step up for my family. Now, I try to take that same effort and focus it on my work at SOPHiA GENETICS. What my family and I went through has fed my fire and passion to work for a company that actively supports cancer and rare disease research. It’s really rewarding and makes me hopeful that there could soon be better treatments for this cancer and that it could one day be eradicated. In the meantime, my family and I are living life to the fullest, celebrating my mom’s small cancer-free wins, and taking nothing for granted.