Rachel

I never could have predicted that my three and a half year struggle with infertility would end with a cancer diagnosis. My husband and I sought help for our infertility issues intermittently for a couple of years from 2018 through 2020. I had a minor procedure in 2018 to remove some endometrial polyps, but other than that, every test we had was normal (or even above average!). I found a new OBGYN in October 2020 who recommended I try a fertility drug called Letrozole. A couple weeks after I started taking the drug, I had an ultrasound which showed an abnormal amount of fluid in my pelvic area. A couple of years prior during my infertility issues, my original OBGYN discovered this same issue and assured me it was nothing to be concerned about. I now realize how important it is to advocate for yourself. Unfortunately, the treatment and care I received from my original OBGYN was not ideal.

After the failed Letrozole trial, my OBGYN ordered a CT scan due to the ultrasound findings. My first CT scan was on Dec. 1st, 2020. The next day (my 37th birthday!), I received a call from my doctor informing me that I likely had late stage ovarian cancer. I was a healthy, active, 37 year old vegetarian, without any previous medical issues aside from infertility. I was shocked to say the least! As far as symptoms go, I had felt slightly more bloated than usual, somewhat tired, and vaguely off for about a year or so.  I had attributed a lot of these symptoms to stress due to the pandemic, the murder of George Floyd in Minneapolis where I live, the tumultuous election, etc.

The month of December 2020 was a blur of medical appointments, scans, and procedures. We were overwhelmed by the love and support we received from our family and friends during this time. After my initial misdiagnosis of stage 3 ovarian cancer, I was correctly diagnosed, after a biopsy, with low-grade neoplasm mucinous appendix cancer (LAMN). I had never heard of this rare cancer in an organ that has absolutely no purpose. I had Cytoreductive Surgery (CRS) on December 31, 2020 (what a way to ring in the New Year!). During my 10-hour surgery, my three rockstar female surgeons removed my appendix, gallbladder, spleen, omentum, fallopian tubes, ovaries, uterus, cervix, parts of my colon, small intestine, and stomach. They also soaked my insides with a hot chemo cocktail for 90 minutes (also known as Heated Intraperitoneal Chemotherapy (HIPEC)). Going into that surgery (commonly referred to as the Mother of All Surgeries (MOAS)) with very little information on how extensive the cancer was and what organs were going to be removed was honestly pretty terrifying, but I just kept thinking one step at a time.

I was officially diagnosed with stage 4a low-grade appendix cancer and my surgeons were confident that they removed all the cancer, which was excellent news! I was in the hospital for about a month, lost thirty pounds, and had to rely on Total Parenteral Nutrition (TPN) to supplement my nutrition for about six weeks. About six weeks after surgery, I started acupuncture and physical therapy, which really helped with my recovery. The physical recovery was difficult, but I was not prepared for the emotional and mental toll of cancer. Thankfully, I have had the privilege of seeing a therapist since my diagnosis, which has been such a tremendous help. I really believe therapy should be a routine part of treatment for any person and care-giver dealing with a life-threatening illness. 

Currently, I’m over a year out and officially there is No Evidence of Disease (NED). Yay!! I will continue to have CT scans every six months for the next few years. I am extremely grateful for my health, my wonderful husband, our absolutely amazing family and friends, our two rescue dogs, and of course my talented, caring surgeons, physician assistants, nurses, and medical assistants. Appendix cancer has definitely changed the course of my life, but I am so incredibly grateful that I still have an awesome life, and I try every day to enjoy it and spend as much time as I possibly can with the people I love.

Cross-country skiing and training for ski races (and probably a little too much red wine!) was something that helped me feel like myself during the years of dealing with infertility, and skiing still  helps me feel grounded and confident. I started working out again during the Summer of 2021 and just completed my first 24 km cross-country ski race with my sister in February of 2022. My goal is to ski the 55 km Birkebeiner in 2023! I’m excited to be serving on the ACPMP Patient Advisory Council.