Chapter 15. Living While Dying

Glioblastology, the Book

Thursday, June 12, 2025. Chapter Release Thursday returns—one last time.

This marks the final chapter of Glioblastology, the manuscript I wrote between 2018 and 2020. Thank you to the generous subscribers who’ve walked with me since we launched the book project in January. Your presence made this release possible—and today, I’m feeling a quiet kind of triumph. (And yes, I’ve got a surprise in store 🤐)

Editing this chapter in the midst of recurrence has been its own strange mirror. What stood out as I revisited that dusty old Pages file was the urgency I felt back then—not just to write, but to say something. Many things, really. But to say them clearly, and on my own terms.

To new readers, welcome. This is the shape of longform I’ve been offering all year.
To everyone: thank you. For reading, subscribing, and having my back.

Chapter 15 holds its weight. It belongs here.

It rocks.

It closes the arc without closing the door.

Not the end.

Until soon. xx. <3 -a.

---

Chapter 15. Living While Dying

May 13, 2016, the cold outpatient floor chilled my feet clad only in thin dress socks pulled above my ankles, protruding from oversized scrubs like ostrich legs. The pale blue scrub hems bunched around my heels, dragging across the linoleum floor, while I approached the MRI machine. I missed a hoodie to pull tight, flip the hood over my head, and peer out from this adult security blanket. I experience distress while I observe the scene—experiencing; observing. I lie on the flat table, and the friendly tech slides me into the machine.

I breathed deeply in that tube, meditatively. A cheaper machine than what I visit a couple weeks later at the IU Neuroscience building for the more involved functional version of the scan I was then receiving. At the outpatient medical plaza visitors smoke cigarettes in the parking lot while overworked technicians draw blood and label vials inside. When the procedure was paused midway through to place an IV line and prepare for intravenous injection of contrast dye—a heavy metal called gadolinium, enough of it in my body by 2020 that I am surprised I do not set off metal detectors—I had little idea that an IV and contrast were not standard on every MRI.

“Okay. Here comes the contrast,” the low fidelity narrator would buzz through my earphones.

“We’re almost finished.”

“This must be the part of the MRI when they give you the contrast,” I thought to myself, unaware that contrast is ordered to detect cancer.

The machine bangs and rattles, beeps and blurts. Inside, I softly circle the emergency call button with the pad of my thumb. I wonder what type of emergency I could have in this claustrophobic closet. I fear that the small piece of lead embedded in the soft flesh of my right ear lobe after a harmless enough school bus pencil accident a decade before would dislodge violently and pierce my ear from inside out. My wedding ring, a thin strip of metal to hold a medical face mask to the bridge of my nose, tattoos, an old piercing with the jewelry long removed, these are on the short list of everyday objects and artifacts that I scrutinize their magnetic properties each time I take my first breath inside the machine. Every so often, I encounter a laid-back tech or one who knows me well enough to trust my adherence to the process that they let me get by with the cotton t-shirt I wear from home and my quotidian Levi’s. I love going for a ride in the MRI machine in Levi’s and sneakers—I feel more person, less patient—but I worry about those rivets on the five pocket 510s that I wear as regularly as a uniform.

I was all patient during my first MRI scan: nervous, uncertain, fearful, and passive. I assume that the radiology techs saw my tumor lit up on the monitors. How could they not? Contrast enhancement, the detection of cancer, blood artifacts, inflammation, and other abnormalities appear bright white on the images, against shades of gray. Surely, the techs saw the tumor. You could fit nearly two ping pong balls inside the cancerous mass, 71mm total in size, each ping pong ball measures 40mm.

It is not the techs’ job to read the results, and anyway, the call was soon underway between the doctor writing the radiology report and my primary care provider. “I’ve notified the ordering physician by telephone of this critical result,” I later read in the radiology report. The telephone call summoning me back to the doctor’s office was placed within minutes. But trained or not, authorized or not, the techs at least had to see that this is not a normal brain. I often wonder what that tech was thinking as he walked me back to the changing room.

“Dead man walking!”

Chilly feet. Sagging waistband. Boxers exposed. Dead man walking.

I get my routine labs drawn at this Plaza, and I often want to stop by the radiology department and let everybody know I am fine. Not great, you know, but, “If it weren’t for my brain cancer…” Well, you know how the rest goes.

It was Spring then, and it is Spring again. Same season, four years later, sixteen seasons that our family has endured. Times of crisis and calm and this damn brain cancer is with me every moment of every day, 1,460 days, give or take a couple weeks while I complete this manuscript in May 2020. Some days, sitting with this material or fielding an email from a newly diagnosed person who found me online through my blog or a published op-ed, reminds me of my diagnosis all over again when I return to the scene of the crime with a patient who worries about their own piercings and pencil lead.

I completed radiation therapy, and the late effects continue to disrupt the tissue architecture of my brain. I swallowed chemotherapy in pill form every day for six weeks, followed by a monthly cycle for eleven months: 115 days of chemo in all, spread across one year, and each required that I open a plastic bag labeled with a biohazard warning, remove the pill bottles, push down, turn the lid, pour a large glass of water, and throw back a few hundred milligrams of poisonous chemotherapy, a grandchild of the chemical weapon mustard gas. Then wait for nausea.

Wait for weakness and fatigue.

Wait for cumulative effects of sustained exposure to the DNA-damaging properties of chemotherapy to elevate my risk for development of other cancers or hyper-mutate the cancer we already know about.

Wait for the next scan.

Wait for signs of disease response to therapy.

Wait for symptoms of disease progression.

Wait to get stuck for labs.

Wait to see results.

Wait in waiting rooms.

Wait for insurance approvals.

Wait for medical review for determination of disability status.

Wait for a new chemo cycle to begin.

Wait for the current chemo cycle to end.

Endurance is survivorship.

Crawl into the dimly lit coffin and lie still to await my fate.

How might we stop waiting and start acting?

This is the story of living while dying.

The story of living while dying is a story of competing frameworks—framing one’s life in the world of the living or framing one’s life in the realm of the dying, and more than competing perspectives, at its worst, these are incompatible. Like when the values of a patient and family to end well, on their terms, are usurped by a “full code”; “do everything.” Ward off the inevitable and interrupt the dignity of completing a life. The story of living while dying holds great potential for growth and wisdom, “Existential experience,” writes clinician researchers, Elise Tarbi and Salimah Meghani, “results in a dialectical movement between existential suffering and existential health, with capacity for personal growth.” Through the movement of suffering toward health, we grow toward the understanding that, put succinctly by ethicist, Brooke Ellison, “Nothing has taught me more about life than has death.”

We need a new model of care that jettisons the lazy labels of healthy and sick, physician and patient, living and dying, and instead recognizes each other in our full humanity, as persons, occupying a dynamic and transient state of being that with vulnerability, storytelling, and close listening are open to understanding by others. So, to reconcile these points of view, to work toward shared humanity, we must look to how we got here. In this fractured place where patients are not heard. Where clinicians have been called glorified data entry clerks. Where medical education teaches healthcare professionals that what lies beneath their whitecoats is irrelevant to their physicianhood. Where social determinants of health describe the disproportionate morbidity and mortality in Black and Brown communities, in non-Black communities of color, among indigenous populations, in congregant housing, prisons, and in areas of food, housing, and job insecurity. Where diseases are to be cured, despite toxicity and decreased quality of life. Where death is to be defeated and overcome, at all costs.

I was awake for my surgery. “Adam,” my surgeon said to me a few hours into the procedure. He’d already removed the bulk of the tumor, “I can continue to remove more tumor, but this comes at the risk of permanent left-sided paralysis, or, we can end the procedure now, protecting most of your motor function, but leaving tumor remaining in the margins of the surgical cavity. What do you want to do?”

It is one thing to be prepared to have your head opened on the table, it is something else to make a decision to alter your life from that point forward. I chose the less invasive path. And probably would have anyway if I had known then what I know now, which is that I have glioblastoma, an aggressive, incurable brain cancer.

I can share this story because I am still alive, living in the liminal space between active treatment and looming death, between possibility and prognosis. An uncharted territory called survivorship, and the first step into this strange new land was the decision on the table, with little preparation in advance.

The surgical report prepared by the surgeon states, “The patient’s brain is relaxed for the procedure.” These words may have clinical relevance, but they lack meaning that is provided only by people with serious illness who offer their experiences that cannot be recapitulated in the lab. A relaxed brain is the biological characterization of a calm body and composed patient. A person who studied his own case and journaled his illness experience to repeat that history to others in hopes that this narrative meets readers where they are.

My medical timeline is not a history of who, what, and when; it is a story of discovery and construction; a story of what there is and what it means. Mine is a story that suggests that we cannot concede to the lure of valuing only that which is measurable, but we must affirm a notion of truth that can only be found in stories; stories that mean something. In these stories, it is not the scientist who has privileged access to the truth, it is the seriously ill, those who are living while dying, who stand in a privileged position to reconcile the dis-unity of biology and biography, cast in the lights of their disease, but more, in the experience of living with illness.

The concepts, disease and illness, present a conceptual dis-unity: Medical researchers and clinicians are trained in a discipline that prizes reductionism as a framework to study disease, that is, seeking causal explanations at the lowest level of biological complexity. Examining cells, but not the people they make up; sequencing the genome but forgetting about the grandkids. These explanations grounded in the reductionist framework fail to respond adequately to the chronic needs of the seriously ill, which are complicated, contingent on our life journeys, and intersubjective, or having to do with the relation between my body, the world, and my social interactions.

Contemporary medicine touts sophisticated diagnostic protocols, increasing success profiling molecular biomarkers for many diseases, and improved prognostication using machine learning, yet only through the voice of the patient may we understand disease as illness, with its nuances, social impact, trauma, and risks to personal identity.

A robust understanding of the illness experience resists reduction. In a quote attributed to Hippocrates: “It’s far more important to know what person the disease has than what disease the person has.” Psychiatrists Hermioni Amonoo, Jennifer Harris, and colleagues channel the spirit of caring for the person when they address the suffering of patients by appeal to, “the physician’s role as healer, listener, and doctor to the person rather than the symptom of disease.” In this same paper, the authors instruct physicians to learn from spiritual care professionals. Healthcare is not disease care.

The state of being seriously ill colors our construction of meaning. In this way serious illness undermines concepts of longevity, ability, security, and health and casts our social interactions in the shadow of illness. But acceptance of this state of being, the state of being seriously ill, living, while dying, is a state described by physician and educator Linda Emanuel as existential maturity. This state requires work and ultimate vulnerability, but what emerges is a better sense of the “greater scheme of things,” or, as I’ve been known to paraphrase the philsopher Wilfred Sellars, how medicine “in the broadest possible sense of he term, hangs together, in the broadest possible sense of the term.”

The story of disease is one of etiology and endpoint; a beginning and an end. It is acute and temporal. It asks for a decisive test, a diagnosis, a clinical note, and a plan of care, but, as in my case, when the cause of the disease is unknown, the presenting symptoms are unique, and curative therapy is unavailable, the disease story is at best confounding, and at worst, framing the disease by pathology offers an incomplete picture for both the practitioner and the patient.

But the story of illness is one of experience and meaning. It is not acute but eternal. It is not the presenting symptoms, but instead, it is the lifeworld in which they present. When the practitioner follows the guideposts of disease, biomarkers and datasets, while the patient seeks validation for their experience, relationships are fractured and trust evaporates, leaving the practitioner and the patient trapped in those same old assumed roles. Disease and illness talk past each other. The patient’s experience must be acknowledged as a person, a person who suffers.

It is not the patients alone, the “end users” or “consumers,” who seek validation for their experience and meaning in their lives. Practitioners, too, face an existential crisis that is going by the names, “burnout” and “moral injury.” At bottom, clinicians and patients, those at the bedside and those in the bed, those under the knife and those holding the blade face their existential plight on two sides of the same street. Sufferers and healers alike, often on the same, recognize that living toward death, living while dying, is the common thread that weaves our stories together.

I ask clinicians to move beyond disease stories so you may turn your hands to do the good work of healing and aid the seriously ill in accepting and living into their states of being and reaching maturity. In so doing, affirmed patients validate your experience as clinicians and your meaning as healers. I invite us to a movement, one of meaning, humanity, and reclaiming our stories from the system that seeks to operationalize our nuanced experiences.

I leave us with this call to action: Let’s join together and navigate a middle way between disease and illness that affirms living in the awareness of dying; that affirms humanity; that views meaning as a creative act we perform to make sense of our experience. Let us recover the subjective experience of our shared human nature, recognizing each other in our full humanity. We are here together, in this moment, distilling our clinical encounters to a snapshot of two people brought together by disease and the pursuit of care; bound by illness and a goal to heal.

As you move forward, I invite you to consider the lessons that I’ve practiced these four years: Align your decisions to your desired quality of life today. Live presently and familiarize yourself with those things that you fear. Consider healing, wellbeing, wholeness, and personal growth that may come through experiencing illness. We each face the same reality, we are, all of us, living while dying. Let’s make the most of it.