Adrenal Courage

In retrospect, there are several odd symptoms that I had been experiencing on and off during the last 3 or so years that I feel may have been symptoms of my tumor. I would experience crippling anxiety in the days leading up to my period, as well as spotting the week before and week after. I would also have episodes of achiness where I felt like I was coming down with an illness, but never ended up getting sick. When I was pregnant with both girls, they were both nestled under my right ribs. After having Aubrey, I noticed that the right side of my abdomen bulged out more than the left. I had assumed my abdomen was stretched out from their position during pregnancy. Also, in December 2023 I began to have some random chest pains. At first, I thought they were secondary to anxiety. Then I noticed we were doing a lot of overhead movements at the gym. I palpated my rib area and my left side felt “off.” I went to a chiropractor for help. He did some adjustments and the pain did improve so I let it go. Also, a few months later I was having episodes of dizziness, diarrhea and fatigue. I saw my PCP for this and had negative labs and celiac testing and I never followed up after. I also caught every single cootie my girls brought home, while my husband didn’t.  

The radiologist report read 12x7x9cm adrenal mass, likely adrenal cortical adenocarcinoma with many small lung nodules. I had never heard of this cancer so off to Google I went. The 5-year survival rate was dismal. I had texted my parents the report. Both of them called me immediately asking a million questions which I had zero answers too. I rushed them off the phone as it was adding to my anxiety and I still had yet to process it. It did not feel real at all. I honestly can’t even remember how Nick reacted when I first told him, but I am sure we were both incredibly upset. Like I said, I had convinced myself I had lymphoma. Not in a million years did I consider I’d have a cancer that has a 13% 5-year survival rate.  

My sweet husband immediately went into “fix it” mode. He reached out to a patient, who is a retired OB/GYN, and discussed my case. This lovely man, whom I never met, took it upon himself to research relentlessly. He told us to go to Mayo for care. Saturday morning, we woke up and Nick began packing our bags for Mayo. From what I knew about the medical system near us (rural healthcare), I felt the trip would be a disappointment and they would tell me to follow up outpatient. I then posted my story on the PA Moms facebook page. A wonderful woman named Amy told me to go to UofM ER for expedited cancer work up. She even called the provider working to give them a heads up about me. 

 We headed to UofM Sunday afternoon, March 2, knowing any consults would not happen until Monday morning. I had labs, CT chest/abdomen/pelvis and was admitted. Over the course of 3 days, I had a PET scan which showed that only my adrenal gland was active, not my lung nodules. I was then discharged with follow up in 2 days for a bronchoscopy with biopsy. When I woke up after surgery, the doctor confirmed that pathology showed cancer.  

I was sent home with more questions than answers. Meanwhile, fielding many well-intentioned but anxiety provoking questions from family members, UofM then scheduled a follow up for me to meet with their adrenal cancer expert, Dr. Hammer, on April 26 – 7 weeks later! This sent Nick and I both into a frenzy as we are reading how rare, and how aggressive this cancer is. Why would they schedule me so far out? I had convinced myself I would be dead within the year. Shouldn’t we get the ball rolling as soon as possible? We also had the mindset that this needed to be removed as soon as possible for the best chance at survival. We were quite disappointed when they didn’t book me for surgery immediately, however, we would learn more as to why this was not advisable.