Adrenal Courage

I took an indefinite leave of absence from work. At this point, I don’t plan to return until this “big mama” is out of me and I have some stability again. Thankfully, my employer’s long-term disability company provided a Social Security attorney to help streamline my SSDI process. After about two weeks—and surprisingly little stress—I was officially approved as disabled. 

The next few weeks were filled with nonstop phone calls and appointments. I never imagined I’d be this busy just managing my own healthcare. I spoke with the NIH and learned more about the clinical trial they’re offering. The medication they’re studying is the first potential targeted therapy for ACC. It attacks a protein that is highly expressed in my specific cancer. 

This is a Phase I trial, meaning they are determining the safest and most effective dose. The treatment is given as an infusion every three weeks. For the first two infusions, I would need to be admitted to the hospital for a week each time. After that, I would only need to travel for the day of the infusion and return home, going back to NIH as needed for follow-up appointments. 

Then came another curveball—because apparently cancer is a full-blown roller coaster. UofM recommended radiation to my abdominal tumor. This surprised me. As far as I knew, primary tumors in ACC typically aren’t radiated because they’re usually surgically removed as soon as possible. In my case, however, because of the metastases, surgery isn’t the immediate focus. Meanwhile, my primary tumor continues to grow and is getting close to several critical structures. Their goal with radiation is to “buy more time” while we search for an effective systemic treatment. 

Being me, I did a deep dive into the research. I found only one case study describing radiation of a primary ACC tumor—and that was for palliation, because the patient was in pain from an inoperable tumor. I wouldn’t necessarily call my tumor inoperable, but it definitely makes my providers nervous. Most radiation in ACC is done after tumor removal (to the tumor bed) or to isolated lung or liver lesions that become problematic. 

I discussed this plan with both my new oncologist at UofM and the NIH team. Both felt radiation was a reasonable option, though they couldn’t answer all my specific questions. After meeting with the radiation oncologist, I learned the goal is to “freeze” the tumor and stop further growth. She also shared that there’s about a 30% chance the tumor could actually shrink. 

The plan is for 10 radiation treatments over two weeks. I completed CT simulation, where they position you in a CT scanner with laser markers and practice breathing techniques to ensure you can stay still during treatment. The radiation team then creates a detailed plan—where to target, how much radiation to deliver, and for how long. I was told this planning process takes 7–10 days, so I should begin radiation within the next two weeks. 

The timing of all of this makes me anxious. I really want to enroll in the NIH clinical trial, but enrollment timing depends on current participants. If someone experiences toxic side effects, they enroll more patients at that same dose. If not, NIH must request FDA approval to increase the dose. Because of this, they can’t give me a clear enrollment date. I do know they’re currently on dose level 8 of 10. 

Radiation would prevent me from joining the trial for four weeks. If I enroll in the trial first, I might not be able to undergo radiation for up to two years, until the trial concludes. So my current option is to start radiation, wait four weeks, and hope there’s still a spot for me. Ideally, I’d prefer dose 9 rather than dose 10, since a slightly lower dose may carry less toxicity. So… more waiting. More unknowns. Perfect for my type-A, super-planner personality.