“You have lung cancer,” said the ER doctor wearing gym shorts and lime green running shoes. I’d known him for less than an hour and here he was, handing me a life-changing diagnosis while wearing Under Armour. He was unfathomably casual, and I was skeptical.
“What? There’s…there’s no way…” I said, tears beginning to roll down my cheeks. An older nurse with the build of Ms. Trunchbull from Matilda began petting my hair, telling me to calm down, that everything would be alright. Hardly comforting, given the news and her thick, calloused hands.
I request to use the bathroom, and Ms. Trunchbull reincarnated helps me walk there, pushing my IV rack for me. She is friendly enough, but repeats empty sentiments as we walk.
“You’ll get through this! Don’t worry, this will only make you stronger…” she said, devolving into a monologue straight out of an “I’m Sorry” Hallmark card. I mostly ignore her.
It was 2016, and I’d been on spring break with my family in Naples, Florida. I’d been coughing and complaining of back pain, so my dad finally insisted I go to an urgent care to see if I had bronchitis or something.
“You dumbass, I told you you should have gone before we left,” he said half-jokingly as I walked out of the hotel room.
Check-in, chief complaint, vitals, x-rays. Within a few minutes the Urgent Care doctor returned to tell me I needed to go to the ER right now, that I may have a pulmonary embolism. I’d had enough rudimentary emergency medical training at that point to know that pulmonary embolisms are quick, silent killers.
They sent me on my way to drive myself to the hospital—13 minutes away, according to Google Maps—with a potential blood clot in my right lung. I attempted to drive the speed limit while practicing a deep-breathing exercise one of my friends had taught me in college; a few minutes from the hospital, I called my dad to explain, but he was too far away to help—instead, he assured me I’d be okay, that I just needed to get to the ER quickly and safely and then he’d meet me there.
Breathe in, hold, breathe out, hold.
I missed the hospital exit and turned around at the next one in a Starbucks parking lot. I started crying, hyperventilating almost (breathe in, sob, breathe out, sob), thinking that missed exit could be the end of me, that I’m either going to die in a Starbucks parking lot or on some hot, nondescript expressway in southern Florida. What a way to go.
I finally made it to the ER, despite all of my most imaginative speculations as to how I might die on the way. More x-rays, blood tests, urine tests. Prior to the x-ray, I’m given a shot of iodine to serve as a contrast, so the important stuff in my lungs and upper abdomen would be more visible than they were in the x-ray provided by the Urgent Care. As they released the iodine into my bloodstream, a rush overwhelmed me—the worst headache of my life, causing me to reel and kick in discomfort. The nurses physically restrained me on the bed as I writhed in pain, their faces confused by my reaction.
“Are you allergic to iodine?” One of them asked me. I’d had otherwise anticlimactic experiences with iodine before. “I don’t think so,” I said through gritted teeth.
Someone goes to find a doctor. I remain on the bed, twisting in pain, feeling as though every ounce of blood in my body is in my head—this is a pain I’d experienced before to a lesser-extent, often in the middle of the night, usually once or twice a month; I’d wake up and feel all of my blood rush north, followed by a migraine, accompanied by a borderline paralysis state where I could barely move my limbs for a few minutes. “Stress reactions,” three different doctors told me, usually after testing me for non-existent thyroid issues. Diabetes, hypertension, anxiety—all were considered and promptly determined not to be the problem. “Probably not sleep paralysis,” a sleep doctor told me, based on my other symptoms and my notably low blood pressure taken by a nurse along with my other vitals. My insurance company refused to cover a sleep study, based on his recommendations.
In the x-ray room, two nurses dragged me to a strip of tape on the floor in front of the x-ray machine. My head still felt like it could implode at any moment. Positioning, click, turn 90 degrees, click, we’re done. I’m ferried back to the bed to be wheeled down to the ER, my migraine and sweating finally subsiding, and here I find the abnormally tan ER doctor in his full running kit. No more than 30 minutes later, Doctor Fitness looks over my x-rays—no blood test results, no biopsy—and tells me with full confidence that it’s not an embolism I have, but lung cancer.
“It’s at the base of your right lung,” he said, using a pen to point to the x-ray on the wall, a menacing white blob at the base of my ribcage. “And it seems to be spreading into your kidney,” he continued, pointing to another white orb below my lung and above my kidney. They wasted no time in admitting me into the oncology unit for the night.
The next 24 hours were a blur of phone calls to best friends and family, and trying to calm my mom down over the phone—she was at home in Michigan, and as you might imagine, being 1500 miles away from your kid who was just told she has lung cancer is not ideal. My friends gasped “oh my god,” over and over again, crying. My grandma was in total disbelief, could hardly say a word. My mom sobbed, while my aunts assured me everything was going to be okay, that they didn’t have blood tests yet, that a biopsy would surely prove everything was normal.
“You’re only 25,” they all repeated. Only 25, I thought, considering the worst.
***
On my second day in the oncology unit, a doctor suggested a biopsy, and my dad not-so-politely refused—we were both on high bullshit alert at this point, having realized how abnormally abrupt the diagnosis was. My dad scheduled an appointment for me with a lung cancer specialist at the University of Michigan, and we’d purchased a one-way ticket for me to fly to Detroit in two days to see him. No more testing without a second opinion.
“Just to make sure nothing goes wrong on the flight, we better do a brain scan to make sure it hasn’t spread to her brain—the altitude could cause problems,” the oncologist insisted.
That $4,000 brain scan determined nothing was wrong with my brain, and I left with a prescription for an inhaler to help with my cough, Percocet to help with my anxiety and Oxycodone to help with the pain I didn’t have. I barely touched any of them.
For the next two days, I wandered around Naples, Florida thinking about all I needed to do before I inevitably died of lung cancer, all while simultaneously high on Percocet and Oxy. It didn’t take long to learn that the combination of Percocet and oxycodone wasn’t fun nor necessary, so I resigned to Coronas on the beach, swimming with my little sisters, hoping they wouldn’t notice my vacant stares and the tears behind my sunglass frames.
***
I flew back to Michigan a few days after my diagnosis for an appointment with a lung cancer specialist at one of the country’s most renowned cancer centers.
The doctor swooped into the office with x-rays in hand, greeting my distressed mom and I with a remarkably unconcerned expression. He put the x-rays up and pointed to the bottom of the lung in question.
“This,” he started, having barely introduced himself, “is just pneumonia. I’m 99% sure of that.”
“I’m really not sure why you’re even here,” he continued. “There’s very little chance this is lung cancer.”
“We’ll get you an antibiotic and if that doesn’t get rid of the cough in a week, we’ll consider other options.”
It’d been less than five minutes. As I got up to shake his hand, he added one more thing:
“But this thing on your kidney—that’s something you might want to get checked out.”
Within four days of daily antibiotics, my cough had dissipated.
“They must have had the janitor look at your x-rays in Florida,” my dad joked when I told him my new diagnosis.
***
Misdiagnoses happen all the time—an Institute of Medicine study done in 2014 determined that 12 million people are misdiagnosed by American hospitals every year. One in 71 cancer diagnoses in particular are misdiagnosed every year, many of which are ultimately harmful for patients. Unnecessary testing and treatment, such as chemotherapy, biopsies or other surgeries, can cause needless harm to patients—and that’s not to mention the staggering financial costs of such cases, nor the mental trauma of being told you have a potentially life-threatening disease when, in fact, you don’t. Diagnostic errors, it’s been found, have contributed to anywhere from 400,000-600,000 deaths every year.
In my case, my insurance company paid somewhere in the neighborhood of $50,000 for me to be diagnosed with cancer I didn’t have, and for two years I continued paying off the deductible for unnecessary MRIs, prescriptions, IVs, a night in a hospital bed. On every check I wrote to Physician’s Regional Hospital in Naples, Florida (or any of the associated labs, imaging centers etc), I made sure to write “for the cancer I don’t have” in the memo on the check. In fact, I paid in checks for the sole purpose of being able to write a memo on them, knowing they’d have to pass through someone’s hands, that someone would see my meager response to this massive injustice.
***
In September, five months after my original, overdramatic diagnosis, I completed my last assignment of the summer as a wildland firefighter in Northern Idaho. At the behest of my then-boyfriend’s nurse parents, I finally went in to get the tumor figured out. His stepmom told me it could be a rare adrenal tumor that is life-threatening if undiagnosed, which was quite contrary to what the lung doctor had told me.
“It can probably wait a few months, but the sooner the better,” the lung doctor had said. Naively, I’d taken that to mean I could do a season of fire and then figure it out from there. I’d spent five months training to be a firefighter, and I wasn’t prepared to let some dumb, apparently unconcerning tumor (tumors are rarely unconcerning, experience has taught me) get in the way of it.
But when I went in for an appointment and blood testing with an endocrinologist in Spokane, WA in September, she immediately informed me of her suspicions for the tumor, which had been the same as my boyfriend’s stepmom—a pheochromocytoma, or pheo for short, a potentially cancerous and often life-threatening mass that takes root in the adrenal gland, forcing it to produce too many “fight or flight” hormones. Even before any testing, the endocrinologist had pegged me:
“She’s a pheo,” she said softly to her assistant, before turning to me to ask if I’d always been this anxious. I mean, yes, I said while bouncing my leg and tapping the linoleum counter next to me in her office, completely unaware that my twitchiness was anything out of the ordinary.
She ordered a battery of blood tests immediately, and requested that I come in for a few urine tests over the course of a couple days. When the results confirmed her suspicions, she demanded an emergency surgery and put me on beta blockers to offset the overproduction of epinephrine (aka adrenaline) in my system. This thing, she said, was 10mm across (roughly the size of a pool ball) and pumping two epi-pens worth of adrenaline into my body every day. Overburdening your body with these hormones can result in adrenal crisis—or an overproduction of adrenaline resulting from severe emotional, physical or physiological stress, often leading to cardiac arrest from a heart overloaded with hormones. She added that pheo tumors are often found in autopsies—notably, they’re known to have a 50% mortality rate for both mother and fetus during or just prior to childbirth. It’s diagnosed in around four people per million, or 2000 people per year in the US—my doctor had been an endocrinologist for over 30 years and had seen less than 10 cases of pheo.
“It’s gotta come out now,” she said. “Honestly, I’m surprised you haven’t put yourself into adrenal crisis yet.”
I’d just finished a season of fighting fire—of being in near constant mental stress and regular physical and physiological stress caused by working in heat, getting mild dehydration, being exposed to daily physical exertion. To be surprised that I hadn’t overloaded my heart with adrenaline under such conditions was no over-dramatization.
“No running, no climbing, no biking and definitely no car accidents until it comes out,” she said, almost in a morbid jest.
***
I spent two weeks watching TV, and then the tumor was removed, rather anticlimactically. The anesthesiologist spent over an hour deliberating how to deliver me the medications I needed for surgery, worried that injecting anything (let alone actually performing surgery) would put me into what I recently learned was a “paroxysmal hypertension episode”—precisely, I later learned, what the iodine injection six months prior had done. He took an echo of my heart to determine if a slight murmur they’d seen in earlier echos was still present, before finally putting me down. Three hours later, I woke to four stitched-up holes in my abdomen—three for the little laparoscopy cameras and one big enough to remove the tumor. Doctors told me to expect a change in my personality as a result of losing all that adrenaline—a relative “calming down” compared to my normal, jittery self. For the first week I was laid up waiting for my surgical scars to heal, and then I went fishing for steelhead. I remember telling my friends—only half jokingly—that if I hooked up with something, I’d probably have to pass my rod off to avoid ripping any of the still very fresh scars open.
Pre-surgery, 2016.
It’s been over two years now, and aside from annual testing to make sure I don’t have a recurrence of pheo in my one remaining adrenal gland, all is well. Recurrence, I’m told, has a 10% chance of happening in people like me—young adults who have no familial history of such conditions, and whose pheo was determined to be “sporadic,” or completely random, beyond reason. The tumor was benign, and initial genetic testing determined I don’t have the main familial gene responsible for pheo, though I have a few more genetic tests before it can be wholly determined I won’t pass the predisposition for pheo to my future kids.
My one remaining adrenal gland has picked up the hormonal slack, and I’ve had no noticeable shift in my personality or constant fidgeting. In what is a relative rarity in medicine, a quick surgery was all I needed to be cured of an otherwise life-threatening disease.
***
I can’t deny the good that came from Doctor Fitness requesting an MRI that day in Florida, nor even in the $50,000 hospital bill I accrued as a result of a bogus lung cancer diagnosis: it resulted in the discovery of a tumor that, had I had a child or gotten into a car accident or experienced any number of other physiologically stressful events while it hid undiagnosed in my abdominal cavity, would have potentially killed me. Pheos constrict your veins, raise your blood pressure to dangerously high levels, put immense strain on the heart and cardiovascular system as a whole. The episodes of elevated blood pressure that I had been experiencing two to three times a month for almost two years could have given me a stroke, put me in shock, or caused a heart attack. And, without an MRI, these masses are incredibly difficult to diagnose, as I’d discovered over 1.5 years of going to the doctor about what I now know were episodes of dangerously elevated blood pressure.
Symptoms are nondescript, vague, can be pinned to a number of other conditions: headaches, excessive sweating, rapid heart rate, palpitations, abdominal pain, excessive thirst and peeing, a sense of dread, psychosis. I personally had only experienced mild headaches that I often attributed to dehydration, occasional excessive sweating, infrequent tachycardia and palpitations, and excessive thirst. Plus, of course, the hypertension episodes. Many of the primary symptoms of pheo can just as easily be diagnosed as anxiety, and often are—they were for me.
My condition was incredibly rare, incredibly vague, and I was incredibly lucky to have found it, to have went to the ER that day thinking I had a blood clot in my lung. Incredibly lucky to have spent a night in the oncology unit, being told that I have so much left to live for, that this is all just part of the journey.
It was part of the journey, in a way I couldn’t have expected at the time.
I’m grateful for that lung cancer diagnosis, grateful to be told that I’d been one serious event from death for three years of my life, thankful to be on the other side of it all with just a simple scar and a wild story. Many aren’t so lucky, and so for all of this—the hours spent on the phone with my insurance company (and to have had health insurance!), the endless checks made out to innumerable medical facilities, the countless blood tests, the night spent in a bed in the presence of dozens of cancer patients, the sound of my mom’s voice when I told her, the look on my dad’s face when he heard “cancer,” the inevitable thoughts of what could happen.
It’s all part of the journey, and I’d have it no other way.