Medicine, I said, begins with storytelling. Patients tell stories to describe illness; doctors tell stories to understand it. – Siddhartha Mukherjee, The Emperor of all Maladies
An impossible question, but each new doctor asks it. A question I’ve answered over and over again since they found the grapefruit-sized mass in my chest almost five months ago, nestled in my mediastinum, encasing but not yet obstructing my major vessels, obstinately refusing to make itself convenient to a surgeon’s knife.
Impossible as it is, I answer obediently each time, briefly listing previous appointments, major symptoms. But when did all this start? It’s a question I could just as easily ask the doctor. Why am I sick, Doc? When did it start? Did it start circa 2015 when I developed brief dizzy spells and then a lump at the base of my skull? When I visited my doctor, concerned especially about the dizziness, and described my symptoms, she wrote “Obesity” in my chart, and gave me a pamphlet on nutrition classes the hospital offered.
Did it begin before that? And how long before? What was the catalyst? Was it being exposed to nearly constant second-hand smoke until I left for college? Was it the chemicals leaching into the ground water from a nuclear plant near my hometown? Was it the glyphosate my hometown sprays onto sidewalks and roads from trucks weekly during the warm months, providing no schedule or warning to residents? Was it the pesticides my landlord bathed my apartment in Oakland in nearly every other month, claiming it was absolutely safe as long as I didn’t go in until the floors were dry? Was it living in close proximity to an abandoned naval base contaminated with radioactive materials? Was it the stress of seeing my mom in the ICU when my sister and I visited for Christmas, 2017, and decided to move back to my hometown to help care for her?
All of these situations were unavoidable, first, because I was just a kid and my parents were just scraping by, and then I was an adult and still just scraping by, living in dangerous places in proximity to good jobs because those places were what I could afford while putting myself through grad school and working for a little more than minimum wage, clawing each day closer (I hoped) to something better, something at least comfortable. And then I did get to a better place, just in time to watch it all crumble and fall away. Is hope where it all began?
Nearly all of my own questions have gone unanswered or have been answered in slant.
And where do they want me to begin? Where the symptoms started? Or when a doctor in a quick care found the mass?
Here’s where I begin for the doctors:
In February of 2018, I lost my sense of smell. Then I got what seemed to be a sinus infection, which I don’t ever remember having before. I’d been very healthy, I thought, up to this point. I gave it some time because doctors always tell you to give yourself time to get over these things yourself before coming in. And if you go in too soon, they send you home with a wait-and-see, and you’ve wasted money you don’t have. I tried decongestants, lozenges, cold medicines, hot showers, strong teas, but it just held on. So I went to the doctor in March. They confirmed a sinus infection.
I returned to the doctor in June because the sinus infection never really went away, even after antibiotics and giving it a little more time and trying more natural remedies. Then again in August when another round of antibiotics didn’t work. They did a CT of my sinuses and diagnosed me with a cyst and acute sinusitis. The nasal spray they’d prescribed created a hole in my nasal septum. I was horrified, but they said it’s common and shrugged it off. They referred me to an ENT because the spray and the other meds weren’t working.
The ENT gave me antibiotics he described as a “sledgehammer” that would wipe out anything. The side effects were pretty scary, even scarier than a hole in your nasal septum, but what choice did I have? I returned in September when the sledgehammer didn’t work. I’d now had a sinus infection for nearly eight months, and my ENT told me I had developed chronic sinusitis and that it would never really go away. He prescribed more antibiotics, and things got a little better. I returned again in January, 2019, when the infection returned full force, and then again in May, 2019.
By that May appointment, I was so tired. And I was a little perplexed and also a little angry that my ENT wasn’t trying to find a deeper cause for this sudden and then persistent illness. I felt that his treating symptoms and not the cause was keeping me in a loop of misery. He didn’t run a culture to pinpoint the bacteria. He didn’t investigate other symptoms or push for a detailed history. He did ask how long I’d been having sinus infections, but when I told him never before 2018, he didn’t seem to believe me.
For that May appointment, I took in a written, comprehensive list of symptoms I’d been having beyond the sinus problems, including asthma-like attacks. I felt like I didn’t have time to tell him all these symptoms during previous appointments or that he just didn’t hear them. I was afraid something was seriously wrong and felt that if he just saw the list of symptoms, he’d realize it too. I said, exasperated, “I’m 34. WHY am I sick all the time?” He looked at the list and said if I didn’t respond to another round of antibiotics orally and nasally as well as a steroid shot, he’d look into things like sarcoidosis, which he insisted is rare.
The steroid shot made me feel like a whole new person. Paired with the antibiotics and a nasal rinse three times a day, I finally arrived at a point where I wasn’t 100%, but I also didn’t feel like I had an active infection. And my quality of life shot back up. When I returned to the ENT in June, 2019, he confirmed I was over the infection.
But then I started having more problems with my lungs. I developed a chronic dry cough. Cold air and smoke of any kind triggered what felt like an asthma attack. Then I got a really bad sore throat. I went to the doctor for a strep test, which was negative, and went home with more antibiotics and no explanation.
I tried to set up a visit with a pulmonologist when the cough held on (not wanting to go through the run-around of appointments I had with the sinusitis), but there weren’t many in the area, and most demanded a referral before they would see me. The receptionist at one said a referral from my ENT would work, which I had him send over, but she kept claiming she hadn’t received it, and she was so rude, I gave up.
I went back to the doctor in August for pain in my clavicle. An x-ray didn’t show anything wrong. Then in October, my cough became productive and I was so, so tired. Fatigue had been a constant companion for over a year, but it intensified. I went in to the doctor in November, thinking I might have pneumonia. I was diagnosed with bronchitis and given antibiotics and a steroid. I didn’t respond to either, so I returned right away, as instructed. The doctor on call that day gave me a prescription for prednisone. I told him I felt like I would never be well again. I felt utterly defeated. He ordered a chest x-ray to make sure nothing had been missed. I wasn’t even trying for answers anymore. I just felt like a giant shrug at this point, drained by the nearly constant illness and the stress of appointments and the talking to what felt like a brick wall.
I received the call in the parking lot of the grocery store. The doctor said there was an abnormality on my x-ray and he wanted me to come in right away for a chest CT. I was too tired to feel the full impact of this news. I went in on a Monday for the CT, and on Tuesday morning, he sat down across from me and told me I had a large mass in my chest. He asked, “How long have you known you were sick?”
The first thing I wanted to say was, if doctors know people know when they’re sick, why do they never listen? But this doctor did listen. Why did it take so long to get to this doctor who listens? I just shook my head wearily and said, “A long time.”
I think most people probably feel numb or terrified when receiving news like this. All that was there but mostly, and oddly, I felt relieved. Not only because I felt like I finally had an answer to the question I’d asked the ENT, but because it felt like my experience had finally been validated. For nearly two years, when healthcare professionals didn’t dismiss my symptoms or questions outright, it felt like they were implying I was being a baby or just wanted attention. Oh come on, they seemed to say, it couldn’t be that bad. I felt like I was an annoyance to family, not only because my illness limited the things I could do, but also because I frequently talked about my symptoms and theorized what could be wrong. I couldn’t help it. I felt rotten all the time, and I wanted to solve this thing, so I could get healthy again. So I could enjoy life again.
How to describe what it’s like when you say you’re sick, and no one believes you? Or they roll their eyes at you. Or ignore you completely. The only word I have is trauma. It was like dropping each word in the dark, and not even being greeted by an echo, like looking into the mirror and seeing no reflection. I felt alone, invisible, but maliciously so, as if I was being punished for something. For existing? For speaking?
“It looks like cancer,” the doctor said that Tuesday morning, as if I were just embarking on an exhausting journey that I should prepare myself for. All I could think about were the two years of being sick, the fatigue that had drained my enjoyment of most things and on some days, I admit, even my will to live. I wanted to tell the doctor, this is not the beginning. This is not where any of this started. This is just where it starts for you.