I thought I sprained my back, turns out it's cancer.
On medical gaslighting and the discombobulating world of healthcare
It started with a backache.
I took Advil and Tylenol before bed, hoping that a good night’s sleep would relieve the pain (spoiler: it didn’t). Within a few days, the mild back pain turned into a sharp, stabbing spasm. I would wake up every morning shivering beneath the sweat-soaked blanket, my teeth clanking in the hot summer weather.
The back pain and fatigue would worsen throughout the day and become excruciating by evening. I could work at my desk for only a few minutes before I started squirming fretfully in my chair. The spasm persisted no matter how many times I adjusted my posture. I popped more painkillers, but it didn’t make much difference.
A week passed, with each day growing harder than the last. I was volunteering as a summer school teacher assistant at the time, and the program coordinator generously offered to drive me to the urgent care clinic. After I told the doctor on duty about my condition, she asked a few quick follow-up questions. Frustratingly, it seemed like she had already made up her mind that the problem wasn’t serious due to my young age and healthy appearance. It was a mechanical problem, she explained while handing me a prescription for cyclobenzaprine (a muscle relaxant). She refused to order any imaging or scans. Per her, I should be feeling better in a couple of weeks.
A month went by with one too many pills and little to no improvement. During this time, I spoke with a handful of generous people. A nurse who worked at a local school health center recommended some heat packs and a 10-minute yoga stretch routine. A Walgreens pharmacist told me it was stress-related and gave me some melatonin gummies. While everyone I met so far had different suggestions, they all assured me that the pain would clear up on its own.
Throughout my life, I have never had serious health problems or been hospitalized before. I exercised on a regular basis and ate a well-balanced diet. I was certain that I understood my physical self well enough.
“I’m recovering,” I kept telling myself. But for some reason or another, I was going at a slower pace this time. MUCH…MUCH slower.
One evening, as I lay in bed, my heart was racing faster and faster.
My Fitbit read 150, which is the heart rate of someone sprinting up a hill. I crawled into the living room and collapsed on the sofa. My spinal cord was throbbing so intensely that each beat reverberated back into my ears. Even with the air conditioner running, I could feel cold, clammy sweat seeping through my clothes like a broken faucet. This was the most intense episode so far. My assumption was that more than a month of excessive cyclobenzaprine and painkiller use had finally caught up with me, and I was overdosing.
I asked my girlfriend—Lily—to take me to the closest ER, which was about thirty minutes away. Anxious and distressed, she called for a cab right away.
The ride itself was a haze. I was so preoccupied with breathing and staying conscious that I didn’t say a word to anyone. The Bee Gees’ anthemic song “Stayin' Alive” was playing like a broken record in my head.
Ah, ah, ah, ah, stayin' alive, stayin' alive...
When we got to the hospital, it was already pitch black outside. Two attendants rushed over and helped me get onto a gurney. I was shocked to learn that I could barely sit up on my own. It felt like my entire body was under assault and could shut down at any moment.
“This is Chaipat Tirapongprasert. 20 years old. He is experiencing excruciating back pain, shortness of breath, and chest pain. He thinks he overdosed on painkillers and is having heart palpitations.”
I was wheeled into a temporary boarding area with a slew of sick people on gurneys, separated by flimsy curtains. One nurse removed my sodden t-shirt, while another put EKG electrodes across my bare chest. The third took my temperature, and I was coming in hot at 104.2 F.
As a general rule, you should call the doctor if you have a high-grade fever (anything above 103), as it can cause a seizure and permanent organ damage if left untreated. And so, bringing my temperature down became the ER’s number one priority. They put an IV in my forearm and started pumping me full of antibiotics and corticosteroids. My eyelids grew heavier with each passing second. Before I knew it, I had fallen asleep.
By the time the night shift doctor showed up, I was wide awake and appeared to be in good health, sitting up and chatting. My temperature went down to a safe zone, and my vitals had returned to normal. The once-unceasing back twitch had also subsided into a dull, tolerable ache. Of course, the cocktail of IV drugs was accountable for all of these.
“Oh, perfect,” I whispered to Lily.
“Now they have every reason to discharge me.”
She appreciated my daily dose of nihilism at first, but fell silent a minute later as the doctor asked the clerk for some discharge paperwork and strode towards my gurney. Nonchalantly, he told me that my condition was no longer critical and that I could return home. I thought otherwise but kept quiet.
By this point, I was fed up with whatever was lingering inside me that caused my body to act so strangely. But even more so with doctors and healthcare workers offering me a flimsy band-aid (e.g., yoga, sleeping gummies, muscle relaxants, painkillers) and calling it a day. Even worse, they didn’t seem to take me seriously, as if they thought I was exaggerating the gravity of the situation. Never in a million years did they imagine it might be anything more serious than stress or a pulled muscle. The ER doctor was no different.
Perhaps it’s a systemic issue. ERs around the world have been facing an increasing overcrowding crisis, to the point where people are dying in the waiting room while waiting for their names to be called. Consequently, ER doctors are incentivized to free up beds as soon as possible by releasing patients who are deemed non-critical or already in stable condition. Doing so opens a pandora’s box of debatable questions.
For example, is a patient who appears to be stable after receiving a huge shot of garden-variety steroids actually stable? Or, how can they ensure that his symptoms do not flare up during the drive home several hours later? No one can provide a conclusive answer. And since medicine is more of an art than a science, our best bet is to believe the doctor’s educated guess.
Ah, well… That’s not a wager I was willing to make.
Particularly considering that it had been a long, tiring day and that everyone was eager to go home.
After assuring me that my condition wasn’t critical, the doctor started going through the checklist of symptoms to ensure I wasn’t experiencing any of them prior to discharge. It was standard procedure, and patients typically deny most, if not all, of the symptoms. If you’ve made it this far, your doctor has most likely looked at your case and done the screening.
“Severe headache?”
“Nope,” I replied.
“Numbness or tinkling?”
I shook my head.
“Having trouble urinating?”
I paused, drawing a sharp breath. My mind flashed back to how my middle school classmates used to mock the gluttonous King Henry I, who ate too much fish and pooped himself to death. Although I didn’t expect to die honorably, I wasn’t about to cower and let the invisible hand of the healthcare conglomerate strangle me down without a fight.
I made my wager right then and there.
“YES,” I blurted, looking the doctor straight in the eyes. “I have trouble urinating. And it’s making me very uncomfortable.”
He looked at me with an inkling of surprise in his eyes as he jotted down some notes. People could mean a lot of different things when they said they were having trouble urinating. It could run the gamut from needing to spend a little more time than usual at the urinal to having a sharp burning sensation down their groin that probably required emergency surgery.
Regardless of the situation, this was a red flag big enough to warrant further investigation. The doctor’s pen moved swiftly as he asked me more questions, this time focusing on specifics like frequency, urgency, and level of pain. Following our brief conversation, he decided it was prudent to order a blood test and book an MRI for my spine.
Mission accomplished!
Months later, I would tell my friends and family about this moment. They wondered why I had not just bypassed the ER and scheduled an appointment with a specialist on my own. A family friend even added that private screening clinics now offer MRIs without a doctor’s referral. I was, as she put it, simply going around the roundabout.
In theory, they were correct. Logistically, not so much. First of all, how do you choose the right specialist if you don’t know which one you need? My rudimentary understanding of high school biology led me to believe that the source of my illness could be in my muscles, bones, blood, or nerves. That tallied up to four specialists. By going in blindfolded on my own, I could see myself mingling with a hematologist one week, a neurologist the next, an orthopedist the following week, and perhaps a rheumatologist the week after that. It would take months to eventually be paired with the right specialist who could address my symptoms. Nevertheless, in an emergency, time is a luxury that we can’t afford.
Speaking of time, scheduling an appointment will also require at least thirty minutes of wading through a vexing maze of automated messages and button presses. Once a human voice cuts through, you will be asked to repeat your name, spelled out letter by letter, and birthdate to at least six different people—all of whom appear to be taking meticulous notes. I wonder if anyone ever reads these notes. And the punchline? Getting past this bureaucratic bullsh*t won’t guarantee you an immediate appointment. You should still expect to wait for the doctor’s schedule to clear, which will take another week or two.
Assuming you make it to the clinic alive by then, the next hurdle is the financial front. While you can “self-refer” to as many specialists and MRIs as you want, your health insurance will label those appointments as “not medically necessary” and refuse to cover a dime. Your best bet for appealing the decision is to visit their website, but all you will get are broken links and more automated chatbots. Kudos to you if you can get through to a real human. This person, however, is likely a sympathetic but powerless phone operator who can’t assist you in any efficacious way.
To sum up, if you have copious time and a couple thousand bucks lying around, then go ahead and walk into a few specialist’s offices or get a scan or two by yourself. Otherwise, I would advise against it.
So, through the proper channels, we go!
I went in for an MRI around 2:30 a.m. The room was eerily quiet, as most hospital staff had left for the night. The technician gave me foam earplugs to protect me from the loud noises ahead. As the motorized bed slid me inch-by-inch into the tunnel, I felt like chicken on a metal tray, sliding toward the dark, refrigerated depths. For the next hour or so, I had to lie as still as possible amid the cacophony of screeching, tapping, and whistling. Thinking about breakfast helped pass the time.
I was sent back to the boarding area after the scan was complete. Lily had last night’s leftovers waiting for me, but my appetite had already vanished since the premature dischage shenanigan. At 5:00 a.m., the doctor drew back the curtain and came over to my gurney. He had the preliminary MRI and blood test results in his hands.
“I don’t want you to be alarmed, but something is definitely wrong,” the doctor said, his voice cracking a little. “A complete blood count revealed severe pancytopenia (extremely low blood counts), and an MRI indicated an abnormal marrow replacement process.”
I had no idea what these medical jargons meant at the time, except that they weren’t screaming sunshine and rainbows. The doctor’s frown and slightly tense expression added to my anxiety. And yet, deep down, a part of me was savoring the sweet satisfaction of telepathically saying “I told you so” to every medical professional I had seen.
After a perplexing month of dealing with these unabating symptoms, I finally had an explanation—a genuine, objective one, not just some educated guesses—which, while still incomplete, was a good start. The doctor told us that he needed to consult with his team and run more tests before making a definitive diagnosis, so he moved me and Lily to a negative-pressure isolation room.
The next 24 hours spent in the isolation room crawled by like a death row inmate counting their final days. I felt less like a sick person and more like a risky, foul-smelling pathogen, as everyone who came into my room had to wear those intimidating blue hazmat suits. They later explained that it was for my own safety.
Lily and I couldn’t see much of the outside world through the reinforced window, so we relied on the clanking sound of the airtight door to tell if someone was entering. Every time a new nurse came in, I would bombard them with the same questions. How long will I be in this room? Could I eat something here? How are we doing with the tests? Oddly, each one seemed to know less than the last about the specifics of my conditions.
By evening, the limbo had become maddening. We had spent the entire day researching and brainstorming every possible outcome—sprain, strain, fractured bones, ruptured discs, arthritis, osteoporosis, spinal tuberculosis, and other weird conditions we didn’t know how to pronounce. Nonetheless, the entire conversation was futile; as they say, “Without data, you’re just another person with an opinion.”
It was then that a new doctor, not the one we had seen yesterday, entered the room. She was holding a stack of paper with my name written on top.
“You’re getting transferred,” she said. “An ambulance is waiting to take you to the Mass General Cancer Center.”
C…CANCER?
Nah, that couldn’t be right.
Lying motionless on my stretcher, I watched through the window as the ambulance navigated the city’s winding streets. The clatter of passing cars and a distant melody from a street musician echoed through the air. I could feel tiny pinpricks protruding all over my skin.
It’s NOT cancer, I told myself.
Getting a life-threatening illness at the peak of my youth seemed like a faraway possibility. In my naïveté, I figured that this kind of thing was reserved for the unfortunate souls growing old and decrepit. Today, I came to understand that illnesses don’t discriminate.
On September 5th, 2023, I was diagnosed with masked low-hypodiploid B-cell acute lymphoblastic leukemia (B-ALL).
I felt a lump in my throat as Dr. H, the oncologist at Mass General, slowly enunciated the disease’s rather flamboyant name for the second time. Loo-kee-mee-uh. Loo-kee-mee-uh. Loo-kee-mee-uh. I kept reciting the diagnosis in my head until it started to feel real. Up until this point, my only exposure to leukemia had been through Thai soap operas, where it was used as a convenient way to kill off a supporting character in order to advance the plot. A clear death sentence, so to speak.
“Is this fatal?”
“Well, not necessarily,” Dr. H replied. “While ALL is an aggressive form of leukemia, our improved chemotherapy regimens and risk-adapted therapy have increased the overall survival rate significantly.”
A gleam of hope, I thought.
“But things can get a bit unpredictable with your low-hypodiploid subtype.”
Ugh, never mind.
I like to joke that the only people who understand what “low-hypodiploid” means are the oncologists, people with the condition, and people who know people with the condition. This genetic abnormality affects only 1-2% of children with ALL and even fewer in adults. It makes a blue moon look frequent in comparison.
Since you—my dear readers—are accompanying me down this rabbit hole, I may as well lay out the gory details now and be done with it. So, let’s all strap in as I break down my diagnosis piece by piece:
Leukemia: Bone marrow is a sponge-like tissue in the center of our bones that makes new blood cells. Leukemia is a kind of cancer that causes the marrow to produce abnormal, malfunctioning white blood cells called “blast cells.” As these blasts grow in number, they begin to crowd out and suppress the production of normal, healthy blood cells. In some cases, the blasts can spread to other organs like the liver, spleen, lymph nodes, or even the brain.
Lymphoblastic: This refers to the type of blast cells that are involved. As for me, these are the cells that would normally mature into B-lymphocytes, or B-cells, which are white blood cells that produce antibodies to fight infections.
Acute: This means that my leukemia spreads rapidly and requires immediate treatment. If left untreated, ALL would kill you within weeks or months.
Low-hypodiploid: Human cells typically have 46 chromosomes. Half come from the mother; the other half come from the father. We call the blast cells hypodiploid if they have a chromosome count below 46. The “low” prefix suggests that the blasts have even fewer chromosomes than is typical for this subtype (mine have 33). As a general rule, the fewer chromosomes the blast cells have, the more unstable and aggressive they become. That is, they are more resistant to chemotherapy, which raises the risk of relapse in the future.
Masked: This means that the blasts are hiding their low-hypodiploid ALL hallmarks. In my case, the blasts with 33 chromosomes went through a deceitful doubling process, producing twinlike doppelgängers with 66 chromosomes. So, what made this so bad? Imagine if some “sloppy” doctors, as Dr. H put it, mistook the presence of 66-chromosome clones for a pseudo-positive prognosis and decided to use a subpar treatment plan intended for lower-risk cancers. Not only would the patient suffer needless harm from the chemo, but the cancer would have ample time to spread to other parts of the body.
Dr. H—unlike those “sloppy” doctors—was beaming with pride as he discussed his success in unmasking the genetic abnormalities of my blasts. While I appreciated my oncologist’s thoroughness, the foreboding phrases he kept repeating, like “poor prognosis,” “high-risk cancer,” and “treatment-resistant,” filled my throat with bitter bile. As soon as he paused to take questions, I jumped in with my million-dollar query.
“Am I going to die?”
Dr. H sighed, suddenly looking exhausted.
“I’m sorry, I don’t have a straightforward answer,” he replied. “Based on the most recent literature, the 5-year survival rate for adult low-hypodiploid ALL is under 20%.”
Under...20%?
The damning number burned its way through my retina, searing into my consciousness. I blinked quickly to shake it off, but the acerbic afterimage only became brighter. All the words Dr. H said afterwards—that medical statistics didn’t account for individual cases and that he would explore every possible treatment option—faded into a distant hum. My hands trembled as I felt a mountain of dense, stuffy air press down on my chest. I couldn’t breathe. I thought I was drowning. Lily reached through the side rail of the bed, sliding her hand into mine. I clung to her grip like the rest of my life depended on it.
Although I knew death was inevitable, I never gave it much thought. If the age at which people die remains constant in the afterlife, then the only advantage of dying young is that you get to stay young indefinitely. Still, twenty-something is a bit too young, don’t you think?
I, like most vicenarians, had not yet any clue what the future held. All we knew was that we wanted to be there. I can’t end. Not yet. I’m just getting started. And now there was a burgeoning black mass floating around me.
I brushed them away like gnats.
They came swarming back.
Hey! Thanks for reading all the way to the bottom.
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