Adrenal Courage

Well, I spoke too soon about my symptoms. My fatigue became quite severe. I could probably sleep 24 hours, wake up to eat, then pass out again. When I went in for my 8^th Keytruda infusion, my provider recommended stopping the cabozantinib on account of elevated liver enzymes, with plans to resume at a later date at a decreased dose. This made me incredibly anxious as we already know that the Keytruda alone was ineffective at treating my cancer. I was also anxious as I had a scan in 8 days. I was worried that I would get the scan and it wouldn’t show much and the doctors would presume it was because there wasn’t enough time on the treatment. I didn’t know if I could handle another unknown at the time. It has been 10 long months of waiting, of failed treatments, of trying my best to stay positive. This was another thing that knocked me down.  

Several weeks earlier I began to attend a women’s Bible study. Like I said previously, I did not grow up in religion. I had been faithfully listening to the Bible in a Year podcast but felt there was still so much that I needed to learn. Looking back, it is incredible to me that I formed opinions around religion without ever having read the Bible. How can I have opinions on something I know little about? Anyways, this particular day I felt defeated. I felt angry and I did not want to pray or reach out to God for help. While I was driving feeling sorry for myself, thinking about how all I wanted to do was go home and mope, not talk to anyone and go to bed early, I got a message from a friend who also happens to be a social media influencer. He sent me a video he made weeks prior. It opens with him saying he knows I’m struggling, knows I’m tired. The tears started to fall. He then goes on to say that God’s got this. That he believes in miracles and he is praying for a miracle for me. I felt like this was a message to buck up and go to Bible study. It was God telling me to keep my faith in him.  

After I finished the video, Aubrey and I had parked at dance to pick up her sister. A balloon came passing by in the parking lot, yet there was no one else around. Aubrey was stoked to get this balloon. She took it into dance while we were waiting. She played keepy-uppy the whole time and the giggles and smiles just melted my heart.  

Remember how our healthcare system is a farce and my insurance carrier refused to cover my cabozantinib? This caused another area of contention. I was approved through the manufacturer for cabozantinib 60mg daily. I feared that since I was not approved at a lower dose, this would cause delays in my care to make the necessary adjustments to change my dosage.  

Like I said, stopping the cabo made me anxious. Four days later, I called the infusion center asking if I could recheck my levels and resume the medications. I was also experiencing some stabbing pains in my tumor which had resolved upon initiation of the cabo. My labs came back improved, but one of my liver markers was still almost 3 times the upper limit of normal. I restarted the cabo the next day in hopes that I could continue on until my scan. Unfortunately, two days later, my labs showed continued elevation. I stopped it again and awaited my next lab draw in 10 days.  

During this waiting process, one of my fellow cancer warriors asked me “how do you take the waiting between scans?” I would love to be the person to reply with something inspiring like “good things come to those who wait.” But I consider myself a realist (if you ask my husband – I am a pessimist). Instead, I just agreed that waiting sucks and is the worst. Through prayer, baking sourdough and my good friend Ativan, I make it through but by golly, it is hard.