I Was Constantly Misdiagnosed
In the beginning of 2014, I was an ordinary American woman in her 20s with a stable job, living my life without a care in the world. I had been fortunate with excellent health and always prioritized exercising and eating nutritiously. Besides the occasional sniffles here and there, I had hardly ever visited a medical clinic in my entire life. However, everything changed when I developed an enigmatic cough that simply would not disappear.
Initially, I consulted a doctor when my cough started to act up. I had never encountered anything like it before, and as someone involved in sales, constantly coughing was less than ideal. My primary care physician was the first to turn me away, claiming it was merely allergies. I was given some non-prescription allergy medication and sent home.
Months went by, and my cough worsened gradually. I visited one or two more doctors who insisted that there was nothing wrong with me, prescribed more allergy medication, and dismissed me. It reached a point where coughing became a habitual part of my life. Multiple doctors reassured me that I had nothing to worry about, so I learned to disregard my persistent symptom and carry on with my life.
However, over two years later, I began experiencing other symptoms as well. I started waking up every night due to night sweats. I lost 20 pounds without altering my lifestyle. I frequently experienced severe abdominal pain. It became evident to me that something in my body was amiss.
In search of answers, I continued to revisit my primary care physician, who referred me to various specialists who each had their own hypotheses regarding the underlying issue. One suggested I had ovarian cysts, but a swift ultrasound disproved that theory. Others claimed it was the result of excessive exercise, asserting that physical activity was disturbing my metabolism or that I had simply strained a muscle. To clarify, I was deeply devoted to Pilates at the time, attending classes six to seven days a week. While I was certainly more active than some individuals around me, I was by no means pushing myself to the point of physical illness. Nonetheless, I followed the doctors’ advice and took the muscle relaxants and pain medication they prescribed, attempting to move forward. When my pain persisted, I sought the guidance of another doctor who diagnosed it as acid reflux and prescribed a different medication. Yet, regardless of whose guidance I followed, my pain never ceased.
Throughout a span of three years, I consulted with at least 10 doctors and specialists, including general practitioners, obstetrician-gynecologists, gastroenterologists, and ear, nose, and throat specialists. In that entire time, I only underwent one blood test and one ultrasound. I requested more tests, but everyone deemed them unnecessary. I was consistently informed that I was too young and too healthy to have a significant underlying issue. I will always remember when I returned to my primary care doctor after spending two years on allergy medication, nearly in tears, still plagued by a persistent cough, pleading for assistance – and he simply looked at me and said, “I don’t know what to tell you.
Eventually, my well-being began to impact my entire life. My acquaintances believed I was either a hypochondriac or desperately seeking a spouse who happened to be a doctor, since I frequented medical check-ups almost every week. Even I started to question my sanity. When numerous highly educated and certified individuals inform you that there is nothing wrong with you, it is only natural to start doubting oneself. I began to ponder, “Is it all a figment of my imagination? Am I exaggerating my symptoms?” It was only when I found myself in a life-or-death situation in the emergency room that I realized my body had been trying to communicate the truth to me.
I Reached My Breaking Point
The day prior to my scheduled trip to Las Vegas for a sales meeting, I awakening with a sensation of hardly being able to walk. I was perspiring profusely, experiencing excruciating stomach pain, and my energy levels were so depleted that I couldn’t function. Once again, I visited an urgent care facility where they conducted blood tests and took a urine sample. On this occasion, they determined that I had kidney stones that would likely pass naturally. I couldn’t help but sense that everyone at the clinic wanted me out as quickly as possible, regardless of how I felt. Ultimately, feeling defeated and desperate for answers, I forwarded my test results to my mother, who works as a nurse. Within minutes, she phoned me and urged me to rush to the nearest emergency room without delay, even booking a flight from New York to be by my side.
My mom informed me that my white blood cell count was alarmingly high, indicating that my body was under attack and fighting fiercely. No one at the clinic had detected this. Frustrated, I drove myself to the nearest hospital, placed my test results on the reception desk, and implored them to help me, whether it meant administering pain medication, antibiotics, or any other necessary treatment. I simply yearned to feel better, and amidst my delirium, all I could think about was the impending flight I had to catch the next day.
When the attending ER doctor reviewed my tests, he declared that I was not going anywhere. I was promptly admitted and subjected to various examinations. Throughout the process of X-rays, CAT scans, blood tests, and ultrasounds, I drifted in and out of consciousness. Then, in the dead of night, I informed my nurses that I was struggling to breathe. Once again, I was informed that my anxiety and stress were likely to blame for these symptoms, and my concerns were brushed aside.
Forty-five minutes later, I experienced respiratory failure. After that, everything became a blur until I regained consciousness with my mother beside me. She informed me that a quarter liter of fluid had been drained from my lungs and that some biopsies had been performed for further testing. In that moment, I genuinely believed that I had reached rock bottom. Finally, everyone had to take my condition seriously. However, I spent the next 10 days in the intensive care unit, growing progressively sicker with each passing day. At that point, all I received was pain medication and assistance with breathing. I was informed that I had some sort of infection, but that I would be alright. Even when oncologists were consulted, they reassured me that I did not have cancer and that another ailment must be responsible. Although she did not explicitly state it, I perceived that my mother knew the true nature of my illness but was too fearful to voice it.
On Finally Getting Answers
Toward the end of my stay at that particular hospital, as a last-ditch effort, I underwent a PET scan. The results confirmed my mother’s gravest fear: On February 11th, 2016, I received the devastating news that I had Stage 4 Hodgkin Lymphoma, a form of cancer that develops in the lymphatic system.
It had disseminated to every organ of my body.
A feeling of relief and intense apprehension overwhelmed me when I received my diagnosis. At last, after all these years, I discovered what was amiss within me. I now had concrete knowledge that my body had been signaling distress signals for years, indicating that something was truly awry. However, simultaneously, I had cancer, it had spread throughout my body, and I had no clue how I would conquer it.
The healthcare facility I was in lacked the necessary resources to provide the treatment I needed, and I was not stable enough to be transferred to another hospital. At this point, I had two choices: take the risk and hope to survive the journey to a better hospital or remain there and succumb to my illness. Naturally, I opted for the former. By the time I was admitted to the Sylvester Comprehensive Cancer Center, I was utterly shattered, both mentally and physically. Above all, I knew that the possibility of dying loomed over me, and once again, I had to entrust my life to more doctors who had previously let me down. Fortunately, this time, they did not disappoint.
Right from the moment I met my oncologists, I had confidence in their abilities. I was admitted on a Friday evening and immediately started chemotherapy that same night. For those unaware, this is not the usual procedure. Typically, patients have to wait for days before commencing treatment. However, considering how ill I was, it was crucial to begin treatment as soon as possible. Due to the aggressive spread of my cancer, I was compelled to undergo what doctors referred to as salvage chemotherapy, which is essentially a tailored treatment used as a last resort when all other options have failed or the situation is particularly dire, as was the case for me. In March, after receiving two rounds of this chemotherapy in the ICU, my body started experiencing partial remission, less than a month after my diagnosis. In April, the cancer returned, this time in my chest. Over the following eight months, I underwent a total of six rounds of chemotherapy and 20 sessions of radiation therapy before finally being declared cancer-free — a status I have maintained ever since.
Many would consider me fortunate. The fact that my diagnosis came so late, yet I managed to survive, is nothing short of a miraculous occurrence. However, I did not emerge from this journey unscathed. In addition to the physical and emotional turmoil I endured, the aggressive treatment and radiation my body absorbed have rendered me unable to conceive. I didn’t even have the opportunity to contemplate freezing my eggs before diving into treatment, and the chemotherapy and radiation severely ravaged my body.
I cannot help but feel that if someone had genuinely listened to me instead of dismissing me as a young, seemingly healthy woman, they could have connected all my symptoms and detected the cancer much earlier. When my oncologist at Sylvester saw the results of my tests, he was furious — almost shouting — that it took three years to diagnose something that could have been easily spotted and treated. Nevertheless, while my story may be shocking and even appear like a scene from a movie, it is not an isolated incident.
Through interactions with other cancer patients during treatment and on social media, I discovered that many younger individuals, particularly women, are disregarded for months or even years by doctors who fail to take their symptoms seriously. Reflecting on my experience, if I could turn back time, I would have gone to the emergency room sooner, seeking care at a different hospital. When you present at the ER, they are obligated to conduct certain tests that an urgent care clinic would not perform.
Then perhaps, just perhaps, I could have commenced therapy sooner.
Looking forward, I am hopeful about my well-being, but my experience has completely transformed the individual I am. To share my narrative and raise consciousness for supporting your own well-being, I initiated a blog, authored a book, and even established Chemo Kits for young adults enduring chemo to provide them with support and let them know they are not isolated.
Ultimately, I want individuals to understand that if you suspect something is amiss with your body, you are likely correct. And as unfortunate as it may be, we exist in a world where you must advocate for your own well-being. Don’t misunderstand me, I am not suggesting that all doctors are untrustworthy – I wouldn’t be where I am today without my amazing oncologists at Sylvester. However, you possess the greatest knowledge about your health. Do not allow anyone else to persuade you otherwise.
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