Recurrence?

In bed, at midnight, nearly asleep, I roll from my back to my side. Suddenly, the universe spins. Or is it just my head spinning? If I were standing, I’d fall over.

I lie still, breathing, and waiting for the dizziness to pass.

Why am I so dizzy? I haven’t had any alcohol. I drank a lot of water today. I didn’t even take any of the medications in my cabinet that help me sleep.

Oh shit. A not-unfamiliar thought enters my head: Has the cancer gone to my brain?

Doctors are unlikely to tell you about this part of the cancer journey, but survivors will. The looming risk of recurrence lingers long past the end of treatment.

Four months ago, when my eye doctor first told me that the freckle at the back of my eye was cancerous, my emotions fled the room. Even in that moment, I noticed the lack of my old friend, anxiety, with its pounding heart and difficulty breathing. Even the sense of shock, with its brain-freeze and sudden ability to notice every detail of the room’s lighting, was absent. My brain just jumped right into questions of action: What do I do? How do I treat this? How do I minimize the time I have to spend even thinking about cancer?

The proposed treatment seemed minimal: one week of having a super-cool custom-fitted radioactive plaque surgically attached to my eye. Before starting this treatment, I thought that the challenges would end the minute I woke up from the surgery to remove the plaque.

I was naïve. It was only after treatment, during recovery, that my emotions flooded back.

Ten-ish years ago, I had lunch at an outdoor café with two cancer survivors. As the sun warmed our shoulders, and we picked at our protein salads, they began comparing notes on their respective cancers: three breast cancers, endometrial cancer and thyroid cancer between them.

“Every time I sneeze, I wonder if it’s cancer,” one of them said.

The other laughed and said, “Yes! Me too!” It was clear that she felt seen. She shared that she’d hoped that the fear would go away; but even five years post-cancer, it hadn’t. The copay bills from multiple doctor visits, to assess whether mild concerns were cancer, had piled up.

At the time, I wondered if my friends needed therapy to deal with what seemed to me an abnormal level of fear. I was, however, a cancer virgin: I’d experienced the disease only vicariously when I’d sat in chemo lounges or set up meal plans to care for these and other friends. Even though I’d seen their struggles firsthand, whenever they talked about their reconciliation with recurrence, they could’ve been talking about ancient Greece as far as I was concerned. My empathy, at the time, was academic.

But tonight, I feel their experience in my very bones. When my head stops whirling, my thoughts start whirling instead:

Is it cancer? Is it cancer? Is it cancer?

To quiet them, I play a little game where I try to rate the probability of a “yes” answer.

Truth: Two months ago, I spent a week with a radioactive plaque attached to my eye to kill off a cancerous freckle in the back of my eye, also known as an ocular melanoma.

Truth: Four months ago, a PET scan showed that I had no cancer outside of my eye.

Truth: The genetic testing on my eye freckle showed that 50 percent of patients with my exact form of cancer experience a recurrence within five years.

Truth: My doctors have told me that there is no known treatment to prevent this cancer’s recurrence.

Truth: So far, there has been no indication that the plaque treatment was unsuccessful, or that there is any cancer anywhere else in my body.

Truth: I haven’t had a scan in four months.

Truth: Even if it has recurred, it’s unlikely that this cancer would show up in my brain. Most often, it travels to the liver, which would not leave me dizzy.

I decide to rate the likelihood of dizziness being a cancer symptom as “low but not zero.”

To further quiet my brain, I make a plan. I have a scan scheduled in two days. That scan will, most likely, confirm that I continue not to have cancer. If the dizzy spells continue, I can go see my general practitioner to understand them.

The key words in this plan are these: “most likely.” I cling to these words as a life raft, hoping that it will carry me safely through this time of dizzying unknowing. My thoughts quiet somewhat, but sleep still eludes me.

If it were daytime, I’d use my champion distraction skills to avoid these thoughts. I’d take a walk, work, read a book, help my kids with homework, cook something or do anything else that offered something healthy for my brain to chew on. But at midnight, these activities will only keep me awake. And my tired brain doesn’t have the strength for the gymnastics needed to reconcile myself to this fear of recurrence.

So I find my phone and earbuds and listen to a podcast on the history of Rome. The topic distracts me, while the host’s calm, melodic voice lulls me back to sleep.

When I wake the next morning, I exit my bed slowly and watchfully, lest I set off a dizzy spell. My head is successfully calm. As I make my way to get coffee, take a shower, pick out clothes and begin my day, I repeat the mantra I plan to tell myself countless times in coming months:

“Today I don’t have cancer.”

It keeps my thoughts and head still, focused on the day to come.