The space between unknowing and knowing

Would you want to know the cancer was probably coming back if you couldn’t do anything to stop it?

It’s been three days since the nurse called. Currently, I am waiting for my lunch order in a Thai restaurant with my best friend, Simone, telling her why (on this particular day) I am panicking. 

During the call, the nurse told me about a medical trial I qualify for, and she asked if I’d like to participate. Doctors are studying the ability to predict breast cancer recurrence, and prevent or delay it from spreading. 

Nearly five years ago, I was diagnosed with stage III breast cancer. Stages I-III are curable, while stage IV (often called metastatic cancer) is incurable. However, many people diagnosed with early stage cancer will later develop metastatic, and it is often a terminal diagnosis. So while I have done all the treatments I can do, I am at high risk of the cancer returning. However, little is known about why or how the cancer returns, so there’s no way to know if mine will. Hence, the trial. 

Participation would begin with a blood test to see if there is any cancer cells left in my body—wayward pieces looking for a place to attach themselves and grow. If the results come back negative, I’ll return every 6 months to retest. If the results come back positive, I’ll be scanned for tumors. And finally, if there are no tumors, I’ll be randomly placed into one of two groups: group A receives a drug that is used to treat metastatic cancer and group B receives no drug and is only monitored. 

The table between Simone and I is now filled with carrot slices swimming in thick peanut sauce, soft fingers of eggplant covered in a sticky liquid, a round pile of white rice in a plastic bowl. Aromas of chili and garlic waft around us. As a low sizzling hiss escapes the kitchen, I tell her about the potential outcomes of joining the trial.

“First,” I begin with my hand hovering high, indicating the top of a list “the test is negative. And then every 6 months when I go in, it is always negative.” 

This is the best outcome, but even this means I am perpetually left in a state of waiting for the results. That infernal liminal space between unknowing and knowing. 

I move my hand down. 

“Second, the test comes back positive, and I don’t have any tumors anywhere. I get placed into the group that takes the medicine, and the cancer doesn’t come back.” 

I wince at the thought of doing more treatments. After radiation, I spent two years taking an oral chemo. The memories of that time are crowded with a dark, pain-filled haze. And even with this outcome, I am waiting to see if the treatments work.

“Third, the test comes back positive. They do the scans, and I don’t have any tumors. But I get placed into the group that doesn’t get the treatments. And then I just wait for it to come back, with nothing to prevent it. And fourth,” my hand is nearly resting on the wilted spinach, “the test comes back positive, and I have tumors. I already have stage IV.”

The silence hangs in the air beside my invisible list. 

“Maybe,” I add as one last thought, “those last two are equally bad.” 

I have spent nearly five years considering the consequences of being diagnosed with metastatic cancer. The shock of that thought feels familiar at this point. But the idea of knowing it is most likely coming without being able to do anything to prevent it settles into my stomach. I would wait. Watch. Wonder when there would be a broken bone or piercing headache, some indication that those roaming cancerous cells found a soft home and are now devouring it.  

Tears pool around the edges of my eyes, and I look around to see if my crying will disturb anyone trying to eat lunch. There are two teenage girls giggling in the corner. I remember instantly what it feels to be naive to the ways bodies break. I want to crawl inside their laughter, pretend for a moment that I too know nothing about hospital beds and scars and phone calls that change everything.  

But I do know. And now, I have to decide what, in the end, is worth knowing even more.

Days later I am at my cancer center. The nurse is reviewing a thirty-page form I’ll need to sign in order to participate in the trial. The process, the risks, the timelines. She gets to a short titled Benefits. It ends with: “What will be learned from this trial may help future patients and lead to better blood tests to detect cancer recurrence.” 

Even if my results are positive and I am placed in the group that gets no treatments, it will tell doctors something about the efficacy of the drugs. I think about all the women I’ve known who have died in the past five years since my diagnosis, about the 30% of people like me who will at some point be diagnosed with stage IV. 

Now, please don’t lump me into the category of selfless cancer survivor. I’m not that. I’m selfish, make irrational decisions based on my anxiety, and get unreasonably excited when a new Love Is Blind episode airs. But there is something about this benefit that prods at my innards. I’d be a tiny drop in the bucket that is this trial, but I suppose it is all those drops that fill it in the end. 

And, if the positive blood test is accurate and I receive the drugs and they work, then maybe I can be spared from dying an early death from metastatic breast cancer (remember, I am also selfish). I make the decision I always knew I’d make.

“You’ll just need to sign here, and we’ll send you downstairs to collect the blood samples.” The nurse hands me a pen and the heavy packet of paper. I sign and give it back. 

It’s been nearly three weeks since my blood was sent to be tested. In that time that I’ve waited for the results, I’ve also cried on the beach at sunrise because the pinks in the sky were so unbearably beautiful. I’ve laughed with my friends until my stomach hurt. I’ve watched almost every episode of season 7 of Love Is Blind.  

I don’t know what the results will say. I don’t know what I’ll do with those results or what will happen to me after I get them. In fact, I don’t know much about what will come next for anything. Because there will always be the terrifying things I know, and the terrifying things I don’t know, and somewhere in between is where I just keep living. 

If you’re interested in the trial I discussed in this essay, please talk to your oncologist about the DARE trial