Science

Coronavirus Diaries: I Have Lung Cancer and a Cough. I Can’t Get a Test.

I’m worried about whom I might have exposed.

an x-ray of a chest
The lung cancer community is getting anxious.
Photo illustration by Slate. Photo by Getty Images Plus.

Coronavirus Diaries is a series of dispatches exploring how the coronavirus is affecting people’s lives. For the latest public health information, please refer to the Centers for Disease Control and Prevention’s website. For Slate’s coronavirus coverage, click here.

Author’s Note: I have metastatic lung cancer. I live in the greater Seattle area, ground zero for COVID-19 in the United States. I’ve had a cough for well over a month. I haven’t been able to get tested to check whether I have the coronavirus. Here’s my log of how things unfolded.

When the cough starts in January, COVID-19 feels like something happening on another continent. Coughing is not uncommon for me this time of year, but it’s always cause for some concern because I tend to get pneumonia. My lungs, which have twice been radiated to treat my cancer, have trouble clearing gunk out. There’s scar tissue, and one left lobe—the left lung has two lobes—is shriveled. By mid-February the cough is accompanied by headaches, fatigue, and shortness of breath. (there’s a blood clot in the main artery feeding my lungs—cancer patients are prone to get blood clots). Given that most patients who take the oral targeted therapy cancer drug I take eventually see their cancer grow again, I’m used to living with uncertainty. Life doesn’t stop just because I don’t feel well.

Cough in tow, I fly to Los Angeles for a conference on lung cancer research, and a training session with fellow lung cancer patient advocates. I’m a retired Boeing engineer, and now in my work as an advocate, I write about the science of lung cancer for patients and provide a patient’s perspective for researchers. At the conference, I chat with researchers from several countries about my cancer patient group’s activities. I shake a lot of hands and share a lot of hugs. When I return home, my chest feels congested like I can’t get a deep breath. I feel like I have the flu. I spend a couple of days in bed and binge Star Trek reruns with my cat, Admiral Dufus, on my lap. Two days later I start coughing up thick green gunk, like I have when previously diagnosed with pneumonia.

The news of the coronavirus where I live worsens with my symptoms—which, though I don’t have a fever, sound a lot like those of COVID-19. On Feb. 28, there’s a report of a young man near Seattle who tested positive for the coronavirus but did not have any travel or exposure to confirmed cases of the virus. The virus is spreading in the community. On Feb. 29, the Centers for Disease Control and Prevention report the first U.S. death from COVID-19 in Kirkland, about 35 miles north of my home. On March 1, there’s another death near Seattle. A postal worker at the bulk mail facility less than five miles from me tests positive. A researcher in Seattle says the virus has likely been circulating in our area for several weeks. I begin to really worry.

I email my oncologist. He doesn’t know if they have a protocol to test for the virus but will order my usual blood draws—I’m due for a checkup soon anyway—and will add a chest X-ray to check for pneumonia. I head to the clinic, wearing my N95 respirator to cover anything my cough expels. I ask the lab receptionist if a COVID-19 test is on the lab order. She says no, and offers no further comment. Back home, I check the CDC website and discover I do not fit the testing criteria. The only people who can be tested are those who have symptoms and traveled from countries having outbreaks, were exposed to someone who tested positive, or are hospitalized with severe COVID-19 symptoms.

Soon after, the nurse calls me with my test results: no pneumonia. However, she suggests I stay home for two weeks just to be cautious. This is not a big inconvenience, as I’m retired from corporate life and now work from home doing advocacy-related activities and writing. We have perhaps a month’s worth of food stocked up, a large yard, and exercise equipment in the basement. But I would really like to know if the coronavirus was going around those conferences so I can warn others.

The lung cancer community is getting anxious about COVID-19. Article after article repeats World Health Organization statistics that most people will have only mild symptoms, except for those who are over 60 and have underlying health conditions. We have so many questions: Which aspect of lung cancer or its treatments qualifies as an “underlying condition”? Are all patients at high risk, even if they are young and on targeted therapy? So far, there’s little data. I share the facts we do have on my blog, and on social media. I keep hoping I can figure out if I’ve exposed anyone to the virus myself, if my cough is evidence that I might have been sick with it while at meetings in Los Angeles.

There are promises of widely available tests. On March 3, Vice President Mike Pence says, “We will issue new guidance from the CDC that will make it clear that any American can be tested with no restrictions, subject to doctor’s orders.” The University of Washington announces that it will begin testing for the virus. One of my social media contacts says two commercial labs will start testing soon. But clinics like mine still don’t have testing guidelines. I am stuck in a loop: My clinic’s website refers testing questions to the state Department of Health. But the DOH website says, “If you have symptoms, call your healthcare provider.” It recommends that people without severe symptoms (like me) just stay home. Risk reduction might be my best play, test or not, since we don’t have a vaccine or treatment. But understanding the true spread of the disease is important for containing and mitigating it, especially for high-risk groups like lung cancer patients. Even as my symptoms subside, I am still concerned that I’ve made others ill. I want to be able to warn people, with accurate information.

This week, the New York Times reported that regulators squashed efforts in Seattle to add testing for COVID-19 into a large flu study. Politico reported a “looming shortage” in the materials needed for tests. On the local news, people are being asked to call their doctor rather than go into a clinic or hospital. Doctors on Twitter are talking about contacting cancer patients and suggesting they postpone coming into the clinic for follow-up appointments. I’ve emailed my oncologist to ask if he has the bandwidth to help me get tested, but he hasn’t responded. I imagine he’s swamped.