Adrenal Courage

I’d like to take a moment to give another shout out to our amazing community! I was approached by an acquaintance who wanted to honor me at the Gaylord High football cancer game. He made a point to tell me that my story and my perseverance is inspirational and he wants the football team to hear it. My family and I stood in front of a cheering crowd, along with a sweet little girl and another man, to give a glimpse into our journies. They gifted us with a football helmet and a monetary contribution. Like I’ve said previously, the Gaylord community has been nothing short of wonderful and supportive since my diagnosis. There are days where I get mad when others say “you are so strong.” I’ve never had a choice. But, if hearing my story can help others then I am all for it! 

Finally it was scan day! I remained apprehensive regarding the results for many reasons. Although my ability to eat larger quantities of food continued to improve, I had improvement in symptoms previously with progression on my scans. I was worried that since I was checking after two months instead of my usual three that it would be too early to make any decisions regarding my scan. Like I said earlier, I was also concerned that stopping the cabozantinib would affect my results as well.  

After ten long, stressful and trying months, I got my first glimmer of good news! My scans were stable. There were no new tumors. For some reason, I felt quite hesitant to become excited about this news. I really wanted the surgeon I had chosen at the NIH to read my scans and tell me his thoughts.  

I had a telehealth with my surgeon about a week later. Given the government shut down, the NIH seems to be working intermittently and were difficult to get ahold of. My surgeon had agreed that he felt the scans were stable, however, he did not feel that continuing on the keytruda & cabozantinib would lead to regression in the disease. He seemed quite torn on what the next steps should be and encouraged me to get as many opinions as possible. He did state that his thoughts were to undergo the abdominal surgery to remove the adrenal mass, wait several months and resume treatment, then undergo right pneumonectomy (right lung removal) afterwards. His thoughts for this were since I have a cancerous lymph node surrounding my pulmonary artery on the right, there is no way to address this other than surgical removal.  

Gutted. I was not expecting this at all. No one has mentioned this as a possibility thus far. It seems insane to me to remove my entire right lung, when I still have tumors in my left. What happens if they remove my right lung, and the tumors in my left spread and grow? Correct me if I’m wrong, but I don’t believe people with cancer can get lung transplants. Would radiation be an option? This is something I hope to find out.  

All within the same day, I received some other less than stellar news. My insurance company, Priority Health, denied continuation of Keytruda because I am taking the cabozantinib; despite the fact that PH does not even pay for the cabo. They report their rational for the denial that these two medications are not FDA approved to be used together. Nevermind the fact that there are countless studies with these two medications being used to treat other cancers, including numerous studies exclusively exploring implications of these medications to treat ACC. Nevermind the fact that my most recent scans show stability for the first time in 10 months, after my third type of treatment.  

I wrote an appeal letter to Priority with my rationale. Nick was on a mission to get this medication approved. They told him that they had thirty days to respond to the appeal. Thirty days forgoing treatment may be incredibly detrimental in the long run. He wasn’t able to get anywhere on the phone as everyone kept citing “the medications are not FDA approved to be used together.” I cannot even begin to tell you how frustrating it is to deal with insurance companies, both as a provider as well as a patient. They dictate so much of the care and they certainly do not have the patient’s best interest in mind.  

While Nick was fighting with Priority Health, the infusion center staff was working on getting the manufacturer to cover the medication. Unfortunately, this did delay my treatment by one day but I did get approved! This makes me feel that the insurance company is a big scam. You cannot tell me that they are not aware that the manufacturers pay for medications in these types of circumstances. At $16,000 an infusion, not including the administration fees, they do not want to pay for these medications. Again, just another added stress that I did not need to deal with. Another instance that may have had a different outcome had I been a layperson. You should not need a medical degree to receive good care.  

Let’s see…let’s add some more stress to the mix. I found a mildly tender lump in my left breast. This concerned me as when I first developed symptoms from my cancer, I had swollen lymph nodes in my breast for about a week. I had a mammogram and ultrasound that showed cyst versus fibroadenoma. The radiologist spoke with me and said “I’m pretty sure it’s benign, but I can’t tell you for certain.” He offered to either watch and reimage in 6 months versus perform a biopsy. I decided to watch and wait, given a breast lump was much less concerning than lung nodules.  

I mentioned at my local oncology appointment that I was experiencing frequent headaches. I thought maybe she would add on a few labs, maybe check my iron. Instead, she ordered a brain MRI.