Finding my way as a Stage IV Cancer Patient

So, last week—after serious delays from norovirus and a respiratory infection—I finally had my follow-up brain MRI and PET scan to see what the cancer looks like now.

To level set: At this stage, doctors don’t talk in terms of remission or cure because the likelihood of cancer returning remains high. What Stage IV patients aim for is “no evidence of disease”—meaning periods of time when no visible cancer appears in the body. During these stretches, patients can step back from grueling treatments, sometimes even taking a break entirely.

The results from the brain MRI came in while I was with my neuro team, so I got to learn the same day as the scans that my brain is beautiful. The MRI continues to show only signs of healing. Even better, the damage to my pituitary gland has reversed enough that it can now be treated with oral medication. At this time, I am not a candidate for another brain surgery—a huge relief.

The PET scan results took a little longer. They were posted to my electronic medical records a few hours before Todd and I headed into Boston to meet with my oncology team. I didn’t linger on the details, but I was disappointed not to see the magic phrase, “no evidence of disease.” I prepared myself for what I was sure would be a discussion about my next round of immunotherapy.

Still, I held onto one bright spot: The word “partial” showed up a zillion times, and I knew enough to recognize that meant all instances of cancer throughout my body had been at least partially attacked and defeated. That alone was a win—far better than seeing signs of new growth.

Then, I sat down with my melanoma specialists—and it turns out, I was wrong. 🙂

When my doctor showed us my scans side by side—the one from before treatment and the one from last week—the differences were undeniable. Before treatment, my lymph nodes, liver, and lungs lit up with active cancer cells, sparking around my organs like toxic fireworks. Now? Well, there is actually no evidence of cancer in my lymph nodes. And everywhere else—there are just these still, dull dots.

My doctor explained that while it’s impossible to say for sure without surgery (and I have no interest in an investigatory operation), what they’ve learned over the years is that scans like mine—with just these dull, still dots—technically show “evidence” of something, but that evidence suggests inactive, “dead” cancer cells. Like scar tissue. Or battle wounds. (My words, not the doctor’s.)

When scans look like mine do today, there’s no data suggesting that more treatment—like immunotherapy—would prevent cancer from returning. The best course of action now? Monitoring. Brain MRIs every two months. PET scans every three months. If anything changes, I’ll restart treatment.

This is, by far, the most grateful I have ever been for a break.

Thank you to everyone who has prayed, sent well wishes, lit candles, and kept my best and highest self in your thoughts. I am deeply grateful for all of us.

I celebrated my good news at my boyfriend’s restaurant, Pastoral, on Valentine’s Day, with my son, Briggs (left) and nephew Nico (right).