You Will Be Brave, Too

Human lives are stories, and as such, defined by words. In my own case, like so many other incurable cancer patients, the word “incurable” is coded for “hopeless” and/or “doomed,” in the first weeks after diagnosis. My oncologists, thankfully, used words like “monitor,” “manage,” and “treat.” There’s never really a moment where the weight of a cancer diagnosis—much less, one of the “bad” cancers (is there a “good cancer?”)—feels good, but at times it can feel like someone is taking up the slack and relieving a little pressure.

Newly diagnosed patients have difficulty seeing the trees because we’re at the mouth of the forest. Using words like “manage” and “treatment options” helped me start seeing the individual trees. Horrible, terrifying trees making up a forest that would give the Brothers Grimm nightmares, but individual, choppable trees, nevertheless. By using terminology, I associated with diabetes, heart disease, and other chronic, incurable conditions, I was spurred to treat cancer as a logistic problem, rather than some hopeless death camp. If you have to make phone calls to schedule appointments, arrange for a ride on infusion day, and keep your prescriptions refilled, that’s miserable, but these tasks moved me from hopelessness to action.

I’ve since come to the conclusion that cancers are simply massive, dangerous logistical problems, and that’s a major reason they’re so lethal. Imagine being in a car wreck, but you have to fill out forms and call specialists throughout the process; one can imagine the danger involved. By using the word “manage,” my medical team inspired a horrifying new prioritization system. I started filing my problems in the categories, “That will kill me today,” “That will kill me tomorrow,” “That will kill me next week,” and, “That will kill me next month.” It’s a stark classification system, but it is one that helps focus one’s resources on the important aspects of survival, and it helped me focus on what I could control in the early days.

Something beyond one’s control: whether science can adequately treat your disease on a large enough scale to be considered “curable.” The word “incurable” is a powerful term on Planet Cancer; I’ve seen people in earlier, more-treatable stages of the disease become distracted by it and lose interest in treatment. By using the words “manage” and “treat,” my oncologists changed my focus from the horrors of the next 20 years to the horrors of the next 20 months. If you’re only focused on the two-year outlook, it frees up a lot of mental and emotional resources to tackle those problems. When I was signing the liability release forms for radiation treatment, I almost panicked when I read the phrase, “This treatment may increase risk of other cancers.” Nothing cools one’s heels faster than the revelation that cancer treatment will . . . cause cancer. My solution to that was to suck it up and sign the papers, because cancer later beats dying of cancer now.

As a five-year glioblastoma survivor, I’m occasionally asked what “the secret” is. That is my favorite inaccurate label on Planet Cancer, because it connotes a sort of cancer illuminati who found some rare lily in the Peruvian Highlands, and attends meetings in some sort of “Legion of Doom” style secret headquarters. “The secret” is just maintaining absolute focus on one’s health and treatment. There is such little margin of error that you must be able to pivot at any second to solve the crisis du jour. If someone’s dragging their heels on a prescription refill, that’s a full business day to solve it. The administrative tasks alone required six to eight hours a week, not including treatment or time spent in consultations with the team. Throw in a regular gym schedule, self-advocacy, continuing education on your condition, and merely surviving cancer is a full-time commitment. My “secret” time prioritization in terms of a problem’s lethality helped me navigate, without being sidetracked by that elusive “cure” that’s mostly a medical fiction. In complete disclosure, I did participate in a Phase 1C clinical trial for a repurposed chemo agent—Marizomib—which was absolutely brutal. I was being tested for the maximum safe dosage recommendations, and awfulness was a feature, not a glitch. So, it’s possible that I just subconsciously compartmentalized that as my “cure” and focused on surviving treatment.

One person I’m eternally indebted to for mentally dusting me off and helping me to my feet on a really bad day was Rose the phlebotomist. One memorably awful Tuesday, when I was experiencing the full range of treatment side effects and weighed down by the crushing inescapable nature of a terminal diagnosis, she drew my blood. Like most patients in that situation, I was, let’s just say, less than sparkling and joyous. When Rose asked about my dour demeanor, I told her that I was scared and depressed at the thought that my life expectancy could be measured in months and weeks. Her response blew me away, “Doctors! You can’t believe everything they say! They told one girl she had less than six months to live; and I still draw her blood every month, seven years later!” God bless that woman for not telling me about some distant relative who died of cancer.

The phrase I liked least—the one that all my other survivor friends also flinch at—was, “You’re so brave.” It wasn’t until a few years out of treatment that author Blair Imani enunciated why it’s so uncomfortable—it’s “othering.” Fortunately, I developed a perfect reply. Unlike most survivors, I went to graduate school for biomedical science, which included an elective in cancer biology. As my cynical professor put it, “Cancer is an unfortunate, but unavoidable side effect of the way our immune and genetic systems are designed.” Put more bluntly, I don’t see the world in terms of people who have cancer and those who don’t; I just see survivors who aren’t diagnosed, and survivors who are. My response to that twisted little accusation of bravery became, “You will be, too!”

Another phrase I learned to despise was, “How are you feeling?” That’s a difficult question to answer even on my good days. During chemoradiation, when even my teeth felt weird and uncomfortable, I had to settle for, “Not too bad, all things considered.” Which was true, until the fourth or fifth week, when I had a radioactive bald strip from ear to ear (brain cancer patients don’t lose our hair the same way as other folks—it’s usually cleansed off by nuclear fire rather than chemo). At that point, I enjoyed the full range of side effects—cold sweats, fatigue, constant nausea, panic attacks, indescribable physical pain, and debilitating insomnia. During one of my weekly checkins, some hapless resident, God bless ‘em, asked me how I felt. I’d gotten all of two hours of sleep the night before. I crossly responded, “Really? You have five minutes with a once-in-a-career patient in front of you, and that’s your question? I feel like I look.”

If there is one lesson to be learned from my experiences with cancer and words, it’s that we frame our experience to our medical team and dictate the tone and tempo of treatment.

Every survivor has a story about the time their medical team showed them a new gear or took them seriously. Mine happened by phone. Because I was in a clinical trial (in addition to Standard of Care), I had to get tested and scanned more rigorously than the garden variety glioma survivor. During one phone call to schedule the next month of my life, I got frustrated about specifying whether I would prefer a 10:00 a.m. or an 11:00 a.m. consultation, and said, “Let’s assume for a moment that I’ve completely cleared my calendar and am dedicating every single resource at my disposal to overcoming this thing. If you tell me to be at the cancer center at 3:00 a.m. on a Wednesday to shove a bicycle up my ass because you think it will improve my odds; I will be there, with lube. I want a similar level of commitment.” Crude, but it got the message across, and, after that, nobody asked “if” I wanted another infusion, scan, or consultation, the medical team started scheduling every last procedure and consultation I might be a candidate for. Brain cancer treatment is as awful as you imagine it would be, but nobody questioned my dedication, and quietly penciled me in for a bath in Agent Orange at the first availability. The presumption of participation eased a lot of the bureaucratic and management burden from me, so I could focus on the important stuff, like not dry heaving.

Your words are the key link between what’s happening to you, and what your medical team perceives in you. They frame and inform the medical picture the specialists have when designing treatment or monitoring you. Choose yours carefully.

This article was featured in the September 2023 Words Matter issue of Elephants and Tea Magazine! Click here to read our magazine issues.