Adrenal Courage

Mr. Fix-it Nick would not accept waiting 7 weeks. He began calling Mayo to obtain a second opinion. He basically hounded the poor receptionist there, but was able to get me scheduled the following week. Now let me tell you…Mayo is one of the most incredible medical establishments I have ever seen. The efficiency of this huge system is out of this world. In 1 day I was able to see an endocrinologist, endocrine surgeon, have labs, EKG, echo and had port placement scheduled for the following morning.  

My endocrinologist confirmed that I do have stage IV adrenal cortical adenocarcinoma. My tumor is nonfunctioning, which tends to respond better to certain therapies, however, also is typically found in later stages as patients do not present with symptoms of hypercortisolism.  She recommended shrinking the tumor with EDP chemotherapy initially. She explained the side effects of chemo; hair loss, fatigue, liver/kidney/heart damage, rash…the list goes on. I’d have 4 days straight of infusions, then have 3 weeks off until my next cycle. She then showed me some images of one of her patients whose tumor shrunk significantly with chemo. There was hope! 

When my doctor told me of the side effects of chemo, I didn’t really care about the hair loss or the fatigue as I knew these were transient and would improve after treatment. When she mentioned the cardiac toxicity, however, I started to cry. I was in the best shape of my life, crossfitting 5-6 days a week, lifting heavier than I ever have, and my nutrition was better than it had ever been. I ate incredibly well – high protein, low fat, moderate carbs. I was drinking 80-100 ounces of water daily. Working out helps significantly with my anxiety and it is also something I love to do. The thought of having heart damage and possibly being unable to continue being active made me so upset.  

 I swear my endocrinologist said that if EDP did not work, then we’d likely trial immunotherapy. That same day, the endocrine surgeon met with me and explained how my tumor was touching my stomach, pancreas, spleen, possible my diaphragm, invading my left kidney, and very close to some important vascular structures, my inferior vena cava. He also agreed with shrinking the tumor prior to surgery to make the surgery easier and hopefully to be able to leave more of my organs in place.  

I had my port placed and a plan. I then needed to schedule with our local oncologist to begin chemo. When I called, they scheduled me 2 weeks out. This was unacceptable to Nick – so he did what he does and hounded them, killing them with kindness but sternness at the same time, and I was able to get in that Friday. My chemo teach was the following week and chemo started Tuesday.