From Symptoms to Survival: Marking My 3-Year Cancerversary with Cholangiocarcinoma
From Symptoms to Survival: Marking My 3-Year Cancerversary with Cholangiocarcinoma
Healthcare Hurdles: Strategies for Navigating the U.S. Medical Landscape
Introduction: A Journey of Resilience
On World Cholangiocarcinoma Day, which marks the third anniversary of my cancer diagnosis, I invite you to join me on an intimate journey through my illness—from the first symptoms to the eventual diagnosis and beyond. This post aims to be a guiding light for anyone navigating the often treacherous terrain of the U.S. healthcare system.
This is a call to action for those grappling with unexplained symptoms, urging you to relentlessly pursue the medical care you need and deserve. It’s a stark reminder that, despite our deep connection to our own bodies, our concerns are too often sidelined, minimized, or ignored—especially for women and BIPOC individuals. Through my experiences, I hope to empower you to heed your body's signals, trust your intuition, and assertively demand the attention and care that is your right.
Ultimately, the intent behind this post is to serve as a resource for education, advocacy, and empowerment for those facing health-related challenges.
Note: This post focuses on practical aspects of navigating the healthcare system rather than the emotional and psychological challenges of living with a terminal illness. For reflections on those aspects, see here, here or here. Additionally, this piece addresses conventional medical institutions, leaving discussions on holistic and alternative medicine to my other posts.
Early Warning Signs: Piecing Together the Puzzle
Three years ago, my life took a dramatic turn with a plunge into the realm of terminal illness. It wasn't heralded by any grand event; rather, it crept in quietly, a series of seemingly unrelated symptoms that slowly unveiled their true nature and led to a rustic and charming clinic nestled in the Vermont mountains.
In the nine months leading up to my diagnosis, the first whispers of a problem began to reverberate in my life, at first, almost imperceptibly. Fatigue wrapped its subtle tendrils around my days, and a newfound shortness of breath undermined the joy and performance I found in yoga, workouts and cycling excursions.
My once robust appetite began to fade, resulting in unexpected weight loss. Then came the migraines, a new and unwelcome visitor in my life, bringing with them bouts of severe nausea that stood in stark contrast to the robust health I had always known. Individually, each symptom seemed manageable. Yet together, they wove a complex tapestry that complicated my daily routines.
The Diagnostic Odyssey: A Maze of Medical Mysteries
Seeking clarity, I embarked on a journey of extensive medical imaging and tests, each isolated in its focus, with various specialists examining distinct aspects of my body.
The tests came back marked "unremarkable"—a term that has since earned a spot in my lexicon of medical favorites. My quest for more definitive answers led me to seek an upper endoscopy, an endeavor that became ensnared in delays wrought by the pandemic's impact on healthcare services.
A minor anomaly in my liver function tests was almost offhandedly mentioned by my doctor, who advised a wait-and-see approach with another test in three months. This left me without any clear answers, pondering whether my symptoms were mere footnotes of aging, early menopause, or lingering effects of COVID. Looking back, I realize that my acquiescence to the standard medical protocol may not have been in my best interest, as it delayed pursuing more definitive diagnostic efforts that could have provided clarity sooner.
A Vermont Turning Point: Symptoms That Couldn't Be Ignored
On president’s day weekend three years ago my partner and I visited family in Vermont, with its picturesque countryside, crisp air and serene, snow-laden landscape. Despite not feeling well on the journey from DC, I initially dismissed my malaise as just another episode in a string of recent health issues. However, the initial comfort of familial warmth in Vermont was soon overshadowed by a peculiar, escalating itchiness on the soles of my feet that disrupted my sleep, followed by the alarming appearance of unusually dark urine—symptoms unlike anything I had ever encountered.
Guided by online research, I suspected gallstones as the culprit—a condition that fit my symptoms and seemed manageable. Upon consulting telehealth, I was promptly directed to get an ultrasound.
Securing an ultrasound during a holiday weekend in Vermont's winter proved challenging, but after some searching, I found myself navigating through the tranquil pines and rolling hills of rural Vermont to Grace Cottage Hospital, which stood out as anything but conventional. It resembled a quaint, welcoming homestead, perfectly in tune with its natural surroundings. Entering the hospital felt like I was visiting a friend's home rather than a medical facility.
This sense of warmth extended to the ultrasound technician's office, which, with its cozy, living-room ambiance and desk cluttered with personal trinkets and family photos, offered a comforting contrast to the clinical presence of the ultrasound machine.
The technician, engaging and conversational, shared stories about family life and her experiences in Vermont during the pandemic. Our relaxed dialogue created a comforting sense of normalcy. When I mentioned my worries about potential gallbladder issues, she shared her own experience with gallbladder surgery, comforting me with her story of a straightforward recovery.
As the ultrasound commenced, however, the atmosphere shifted. The technician stopped chatting. And the probe, at first gentle, turned into a source of pain, pressing hard under my right ribcage, mirroring my increasing unease.
The technician methodically scanned the same area multiple times, adjusting the pressure with each pass. The clicking sounds that accompanied each pause of the probe, likely for taking measurements or making annotations on the image, heightened the tension. Unfortunately, the screen was positioned beyond my view, leaving the technician and me in an apprehensive silence.
As I prepared to leave, any remnants of normalcy vanished. Seeking even the slightest reassurance about my gallbladder concerns, I looked for a subtle nod or a comforting smile. Although I recognize that technicians are not allowed to give diagnoses, I hoped for any insight that might hint at her findings. The only gesture offered was a promise to immediately send the results to my doctor in DC via FedEx. The sudden shift from casual conversation to the formality of the procedure was a vivid reminder that what remains unvoiced can profoundly foreshadow the complexities ahead.
Returning to the reception to collect my blood test results, a sense of foreboding enveloped me. The results showed alarmingly high liver enzymes, elevated bilirubin, and hypercalcemia. The revelation was a mix of shock, fear and resignation: undeniable signs of a serious health issue, yet with the imaging results still pending, all I could do was brace for what came next.
Stepping back into the open air, I reflexively reached for my phone to resume a previously interrupted media interview, clinging to the familiarity of work as a bastion of normalcy.
The next day brought a pivotal call from my primary care physician. Our exchanges had always been friendly, but the gravity in his voice was unmistakable. He revealed that the ultrasound showed substantial masses across both lobes of my liver, the report dryly noting, "The findings are concerning for underlying malignancy.” This carefully chosen language walked a fine line between clinical caution and the hint of cancer. Even so, I assumed that whatever it was could be addressed with surgery and perhaps chemotherapy, not fully grasping the complexities that lay ahead.
Confronting Reality: The Unwelcome Discovery
By Monday morning, upon my return to DC, I found myself quickly absorbed into the medical industrial complex, facing the sterile embrace of a CT scan machine—a place that would eventually feel like a second home. While the initial report was phrased in bland medical circumlocutions, it was unequivocal, revealing two large lesions on my liver suggestive of cancer, now identified as "likely cholangiocarcinoma." It also noted necrotic lymph nodes and dilated intrahepatic bile ducts. There was little doubt about the severity of my condition.
On that day, the term cholangiocarcinoma, previously unknown to me, abruptly became a focus of my life.
It was also the moment when the internet transformed from a useful resource for medical information into a bearer of daunting statistics and ominous forecasts. Among the startling revelations were that a majority of patients do not live beyond a year following diagnosis; the five-year survival rate is 2%; and although surgical removal presents the only potential for a cure, it carries a daunting 75% risk of the disease returning.
Less than a week later, I was at Memorial Sloan Kettering in New York for a 7 am appointment with a leading cholangiocarcinoma specialist. The priority was to manage my dangerously high hypercalcemia, run various imaging and other tests, schedule a biopsy, and implant a Medi port. I was quickly drawn into the swift current of oncological procedures.
Although minimally invasive, the biopsy provoked an unexpected and severe systemic response—intense pain and a high fever, necessitating an emergency room visit. After completing a battery of tests, the surgeon’s dry comment, "The liver doesn’t like to be poked," highlighted the liver’s vital importance in the body's overall functioning. Cancer had decided to pick a fight with one of my VIP organs.
Worst case scenario: Stage 4, Inoperable, Incurable
Shortly thereafter, I received the official diagnosis: stage 4 inoperable intrahepatic cholangiocarcinoma, characterized by a liver tumor measuring 13 by 11 cm with metastasis to the lymph nodes. Further complicating this grim tableau, the tumor had aggressively invaded my left and middle hepatic veins and was compressing against my portal vein.
My radiation oncologist highlighted a critical detail last year, noting that a mere 2 mm of vasculature was responsible for draining my entire liver, making me susceptible to what could be described as a "heart attack" of the liver.
The average age of diagnosis of this disease is 70. As I came to grips with my new reality, I wracked my brain for causes of this cancer. I had none of the conditions that lead to it, except I imagined perhaps “liver fluke disease”, a parasite found in uncooked fish mostly in Asia. I tried to remember all my fish meals over the last thirty years of visits to Asia, in places where raw or undercooked fish might have been served. But that possibility was soon ruled out by my doctor through testing. I considered the impact of carcinogens and pollution from my extended time living and working in China. Another factor could be my germline DNA mutation, BAP1, known to elevate the risk for certain cancers. Historically, cholangiocarcinoma was not linked to this mutation, but my genetic counselor at MSK mentioned observing a noticeable increase in cholangiocarcinoma patients carrying the BAP1 mutation in recent times.
I ultimately abandoned my efforts to pinpoint the exact cause of my cancer, accepting that its origins might forever be unknown and realizing that uncovering them would not alter my circumstances.
The Silent Epidemic: Cancer's Quiet Advance in the Young
Despite cholangiocarcinoma generally affecting the older population, I've noticed in my support groups an increasing number of younger individuals, in their 30s and 40s, being diagnosed. This trend mirrors a broader pattern across various cancers, suggesting potential shifts in cancer epidemiology, perhaps due to environmental carcinogens, as discussed in recent research and literature including this New Yorker article.
The importance of younger people proactively pursuing medical testing cannot be emphasized enough, particularly in light of the common occurrence of misdiagnosis among this demographic. This challenge is compounded by a healthcare system that frequently correlates cancer with older age. Research and surveys, including one by the Colorectal Cancer Alliance, highlight the problem of initial misdiagnosis in younger cancer patients, leading to late-stage discovery of their conditions. Such findings advocate for greater diligence and self-advocacy in pursuing diagnostic tests and consultations, to combat the assumptions and errors that delay critical care.
Treatment Trenches: Chemotherapy, Side Effects, and Self-Advocacy
Given the specificities of my condition, marked by the invasion of the portal vein and the spread to lymph nodes, my cancer was classified as inoperable, making it incurable and not amenable to the odds of remission. I embarked on a course of palliative chemotherapy — cisplatin and gemcitabine — which, to my good fortune, induced a modest reduction in tumor size before ushering in a two-year period of stability —a major victory for this type of cancer.
Nonetheless, upon the disease's resistance to this treatment, I shifted to a targeted therapy that had been approved by the FDA since my diagnosis, Pemigatinib. Fortunately, I have managed to maintain stability on this treatment, exceeding the statistical average of nine months of progression-free survival.
Empowerment Through Inquiry: The Value of Second Opinions
Last year, when a scan showed some minor tumor progression, I sought a second opinion that led to a key intervention that has significantly helped manage my disease and allowed me to stay longer on my current treatment.
The crucial guidance was provided by a leading cholangiocarcinoma expert at MD Anderson Cancer Center in Houston, who deemed me an ideal candidate for high-dose ablative radiation of the liver, a method innovated at MD Anderson by an eminent radiation oncologist, Dr. Christopher Crane. Dr. Crane later joined Memorial Sloan Kettering (MSK) and brought this pioneering treatment with him. Upon my return to NYC, I met with Dr. Crane and was able to receive this groundbreaking form of liver radiation, complementing the systemic treatment overseen by my regular MSK oncologist. The process led to a productive collaboration between my regular oncologist and Dr. Crane, thereby facilitating access to this therapy for additional patients. Had I not sought a second opinion, this therapeutic avenue, which had been available all along within my own healthcare facility, would have gone untapped.
Seeking second opinions in the treatment of serious illnesses is essential for many reasons: ensuring the most accurate diagnosis, identifying effective treatment options, and investigating clinical trials and less invasive alternatives. This process also aids in matching patients with the healthcare team and treatment center best suited to their needs. While insurance companies typically support second opinions, patients will want to consult their insurance provider to clarify the specific steps required to guarantee coverage for these consultations.
Obtaining a second opinion is a crucial step in empowering patients to make informed decisions about their healthcare, ultimately improving treatment outcomes and enhancing quality of life. It is widely recognized within the medical community that competent doctors encourage second opinions. Should your doctor be opposed to it, it would be a good time to find a new healthcare provider.
Cancer Care: A Delicate Balance Between Life Quality and Quantity
However, the extra time these treatments have afforded me has also come with significant drawbacks. The debilitating side effects of cancer therapies often overshadow the disease itself, presenting a challenging equilibrium between prolonging life and preserving its quality.
My personal prioritization of life quality over duration has required ongoing dialogue with my medical team about my preferences. Oncologists typically place the highest importance on extending their patients' lives. On numerous occasions, I have had to draw attention to unbearable side effects and advocate for modifications in my treatment plan, including lower doses of chemotherapy and steroids, as well as adjusting treatments and procedures to better accommodate my tolerance and lifestyle.
There have been multiple instances where my requests were forgotten or entangled in bureaucracy, leading to situations where the dosage and timing of treatments and medications remained the same despite my feedback. This highlights the importance of remaining constantly vigilant in advocating for one's values and preferences throughout the treatment process.
Of course certain legal mechanisms exist to guarantee the respect of one’s medical preferences, particularly concerning end-of-life situations. In a future post, I intend to discuss matters such as my Do Not Resuscitate (DNR) order among other related decisions. For those looking to gain a deeper understanding of how I've managed the balance between life's quality and its length, I encourage you to look at this earlier post or to watch the video series titled "Pulling Back the Chemo Curtain." Designed for friends and family, this series seeks to offer insights, comfort, and possibly even entertainment through the challenges I’ve encountered.
Video: Navigating Trade-Offs with the Neulasta On-Body Injector. This compact device combats low white blood cell counts, a common chemo side effect, while introducing others, such as bone pain, headaches, nausea, fatigue, fever, and dizziness.
Hospital Hurdles: Advocacy Amidst Systemic Barriers
Advocating for one’s interests becomes especially important in hospitals, where the specialization of medical professionals can lead to a less holistic consideration of the patient's condition. Yet self-advocacy in these environments is challenged by factors like physical weakness and constant sleep disruption. Additionally, a sense of fog and inertia often envelops patients once admitted, making proactive self-advocacy even more challenging. This state, commonly associated with hospital-induced disorientation or "hospital delirium," impairs cognitive and emotional functioning, a phenomenon particularly noted in intensive care or during extended hospitalizations. Before my cancer diagnosis, my only hospital stays were brief, limited to a day or two for orthopedic procedures. However, over the last three years, every admission I’ve had to contend with has involved a period of profound disorientation.
During one stay for a blockage, I remained confined in the hospital well into my recovery period. Gradually, as I regained my strength and the mental fog dissipated, I recalled that I had planned a trip to Peru the following week. I became determined to be discharged. But my medical team, consisting of around 8 doctors trying to puzzle out an explanation for my condition, were not remotely thinking about a plan for release. The delay appeared to stem from bureaucratic inertia and a cautious approach rather than any medical necessity. So I approached them with a clear proposition: give me the precise criteria required for my release. I then set about to address each item on their list, and finally reclaimed my freedom.
During another admission, I was caught in a cycle of daily postponements for an invasive procedure to investigate a suspected bile duct blockage, with instructions to fast each day, leading to repeated delays over four days. This situation, stemming from the hospital's heavy workload, significantly weakened me after so many days without food, risking my ability to continue to undergo essential cancer treatment—a concern that seemed overlooked. Faced with this, I informed my doctors I would decline the procedure if it faced any further delays. They then opted for an MRI, a non-invasive alternative that fulfilled the same diagnostic needs. This option, which had not been offered initially, not only preserved my strength but also circumvented potential complications such as pancreatitis, a critical consideration given my condition. This experience underscores the importance of advocating for oneself in healthcare settings and highlights the need for patients to be aware of alternative diagnostic options that might not only be less invasive but also safer, especially for those managing complex conditions.
The What-Ifs of Early Detection: Confronting Healthcare's Fragmented Reality
Reflecting on my journey from the subtle early signs to the reality of this disease, I sometimes wonder if more assertive actions on my part could have altered the course of my disease. Instead of insisting on further diagnostic clarity and procedures, I complied with the healthcare system's pace, awaiting additional tests and conforming to the prescribed process. I question whether more aggressively seeking an urgent endoscopy or resorting to emergency care during intense bouts of migraines and nausea could have led to an earlier diagnosis, potentially when surgical intervention was feasible.
The fragmented nature of the U.S. healthcare system played a significant role in the disconnect observed among my various symptoms. For example, my migraines, viewed narrowly through the lens of neurology, prompted a CT scan of my brain but remained separate from the larger picture of my health. Similarly, a colonoscopy examined areas adjacent to the liver without assessing the liver itself. This compartmentalization and failure to synthesize disparate symptoms into a cohesive health narrative likely contributed to the delayed recognition of my condition. While each doctor was competently performing within their specialty, they worked in isolation, focusing on specific organs as if they comprised the entirety of the patient. I sincerely hope for a future where the medical field embraces a holistic perspective that appreciates the intricate and multidimensional nature of human beings. In the meantime, I explore several holistic approaches and treatments found beyond the boundaries of conventional medicine.
Additionally, the manner in which our insurance system incentivizes or discourages certain tests, treatments, and consultations adds to the complexity. My case falls outside the typical algorithms that insurance companies use to authorize tests or guide treatment. On multiple occasions I have been denied scans or medications. Clearly, we are more than the statistical probabilities to which insurance algorithms might attempt to simplify us.
The insights gained from these experiences over the past three years have transformed me into a more formidable advocate for my health. Navigating the intricacies of interacting with doctors and medical offices, and overcoming the obstacles and denials set by medical insurance companies, each phase of this journey has required me to assert control over my healthcare. It has empowered me to confront and challenge the constraints imposed by my illness. For those unable to closely monitor their own healthcare, navigating these complexities can be even more daunting, underscoring the importance of caregivers and the need for systemic changes to make healthcare more accessible and patient-focused.
Cancer is a Team Sport: Finding Strength Together
I've also found empowerment through community, including connections forged with fellow patients in the cholangiocarcinoma community and beyond. Together, we've created a network of encouragement, sharing personal stories and advice, and pushing for greater awareness and research. The Cholangiocarcinoma Foundation encourages this important aspect of care, while also fostering a network of doctors and researchers who are accelerating the research in exciting ways. I look forward to reconnecting with my fellow cholangio “warriors” at this year's annual meeting. Despite my reservations about framing our experiences in terms of battle, standing with those navigating these turbulent waters has instilled in me a sense of strength, courage, and purpose.
Another form of empowerment I've embraced is refusing to allow this disease to dominate every part of my life. Despite the aggressive nature of this cancer and the rigorous demands of its treatment, I've made a conscious decision to restrict my role as a patient to medical settings. And when caught within these confines, I consciously reconnect with and embody my many roles beyond that of a patient. Embracing this broader identity, I am committed to living as richly and fully as possible, beyond the scope of medical appointments, treatments and hospital stays.
Cancer exacts a heavy toll, stripping away so much of what makes life rich and fulfilling. I am determined that it will not strip away the many roles I inhabit or the sources of love and contentment in my life. This approach is not about denying my reality or the gravity of my diagnosis but about affirming my life's worth and potential, regardless of the time I have left, be it weeks, months, or years. This approach underscores a journey not just of survival but of living with intention and acceptance of the shadows cast by cancer.
Conclusion: A Call to Action and Reflection
In reflecting on my journey with cholangiocarcinoma, it's clear that our narratives extend far beyond individual struggles; they highlight the need for advocacy and underscore the urgency for systemic reform within the healthcare system. My experience, deeply personal yet I hope more universally resonant, amplifies the call for empowerment, especially among women and BIPOC communities who frequently encounter disparities and disregard within the healthcare system.
The struggles we face in the healthcare system are not unique but are compounded by systemic issues. It's crucial to be your own advocate. Bring a friend or family member to appointments, keep meticulous records of all communications and bills, and thoroughly understand your health insurance policies.
Armed with knowledge, we can confront and challenge prevailing paradigms, advocating for a healthcare system that prioritizes individual well-being over profit. By engaging with community networks that offer support and strength, we reinforce the notion that, while our health battles are personal, we are not alone in our experiences.
Proactive engagement is needed to catalyze change. Advocate for policies that safeguard patient interests, share your stories to illuminate the lived realities of navigating the healthcare system, and contribute to fostering a more empathetic and informed society that can drive transformative change.
In our journey toward health, let us vow to be diligent protectors of our well-being, fervent advocates for our care, and outspoken allies for those whose voices go unheard. Together, through solidarity and shared purpose, we can navigate the complexities of the healthcare system, champion our health needs, and foster a community of empowerment and support.
Questions for Reflection and Action
1. What strategies are effective in demystifying the healthcare system and ensuring you navigate its complexities with greater ease?
2. How can you effectively communicate with healthcare professionals to ensure your concerns (and those of your loved ones) are not only heard but also acted upon?
3. What steps can you take to prioritize your well-being, ensuring that your health decisions align with your life's values and priorities?
4. Which resources can you tap into to stay abreast of the latest developments in treatments and research relevant to your (or your loved one’s) health condition?
5. In what ways might sharing your personal health journey inspire and educate others facing similar challenges?
6. How can you form or join networks of support that empower and uplift individuals encountering similar health obstacles, enhancing a collective sense of strength and solidarity?
Additional questions for reflection and action:
7. How can you incorporate wellness practices into your daily routine to support your physical and mental health amidst ongoing health challenges?
8. What mechanisms can you establish to keep track of your medical history, treatments, and medications, ensuring you're prepared for appointments and healthcare decisions?
9. What role can you play in advocating for healthcare policy changes that directly affect patient care and rights within your community or beyond?
We may encounter many defeats but we must not be defeated. - Maya Angelou
Fascinating informative : both practical and personal ! Your ability to convey information via the written word is amazing!
Thank you for being so generous with your, time, your, life, and your experience told so vividly. Not only a great read but the information is so valuable. I could never even begin to imagine fighting for myself within this broken medical system. Thank you for hi-lighting self advocacy.