This post is dedicated to my dear friend Jessica Morris. Rest in power, Jess. xx
I came into brain cancer in a very curious place: Young, otherwise healthy, finally getting my shit together, and seeing on the horizon an opening onto new vistas of possibility. The enthusiasm for that moment in time – life suspended above the turbulent waters that cancer churned – held acceptance of the diagnosis at arm’s length. Like the musical notation on the bass clef that anchored a song while the melody wormed its way into your ears and animated the feet beneath your beating heart, my confidence in the rhythm of fresh and new opportunities rooted my life in an optimism that the gasp of a cancer diagnosis could not quiet.
The melody of daily life crescendoed to frantic staccato notes while my body moved from scan to scan exposed to needle sticks, scalpel, and blood, but the bass hit on the quarter notes and kept me marching forward. I was of two songs; two lives. A stable life where I was a spouse, a young dad, a grad student. Another life was born in an exam room: “I regret to inform you that you have a brain tumor.” The optimism of the former life proved recalcitrant in the face of the latter. Neither story would be subsumed under the other.
Our songs, our stories, they are ourselves, our narrative identities, and for now, my life told these two stories. One story sang of hope and the other lamented hope’s loss. In the in-between space, a vacuum of meaning and a dearth of certainty; there was fear, but the antidote to fear is information, and the pursuit of information in inquiry.
The devastation of a brain tumor could not overcome the earnestness with which I pursued the science of the damn thing; the inquiry; the curiosity. And so here I was in a very curious place: Still hopeful. Still optimistic. But dying (so they said). But rather than let the virtue of curiosity dissolve into a fool’s errand, I dove into my disease, armed with inquiry, in pursuit of information, the antidote to fear.
All areas of life were fresh: only a few years married, young kids, a new job, the end of grad school, and even brain cancer was fresh. It was new territory, a rare disease, strange seizures, side effects, and cytotoxicity. For a hungry mind, I feasted on the fresh information.
Part of surviving a disease, part of being a patient, is becoming the expert in the lived experience of your illness. The mechanisms of action sit in the petri dishes and textbooks but the experience can’t be recapitulated in the lab.
Over time, the new experiences become old experiences, and the monotony of a life under medical management becomes routine. It’s no longer hopeful, nor optimistic, nor fresh, nor whatever else, but instead, life is a long, protracted chore that must be endured. There are no more surprises, only symptom burden, and without surprise, there is suffering.
Five years is my landmark.
I’ve lost the rhythm and life has been writing the melody. It is common in our community to hear of internet friends, friends of friends, and distant friends die, but this year I’ve lost three personal friends; brain cancer friends. What if what was fresh has rotted? And the devastating disease is putrid flesh decomposing on the skeleton of reality where hope once lived. Could the once unimaginable achievement five years ago of celebrating this half-decade milestone with a cold beer and a few tacos be the song’s end? Would life be devoid of surprise from here on out, and only suffering remain?
But what if things may be made new all over again?
In just twelve months time I will be six years post GBM diagnosis. If only 5% of us make it this far, what good does it do to the 95% if I don’t continue to report from the front lines of illness? I am a journalist deployed to a new world that tragically few know.
I am a voice who now embarks on their sixth year of survivorship.
I come into the realm of survivorship in a curious place: An expert in the lived experience of my illness, but not yet an expert in the geography of long term survivorship. You and me readers, we figured out the first five years together, and now we are cartographers on a more grave mission, to chart the course from years six through ten.
Do you hear it? It’s that rhythm; song, dance, and story. I see on the horizon new vistas of possibility.
Wednesday, May 26, 2021 is my five year craniversary: Five years after my awake brain surgery in 2016, called a craniotomy, when two surgeons partnered to remove the majority of a 71mm primary brain tumor from my medial right parietal lobe.
Adam, May 26, 2016, in the pre-op room just before his craniotomy
What all that means is that a mass the diameter of a baseball grew itself into a tumor located in the part of the brain that controls motor movement, sensation, and knowing where my limbs are in space for the opposite side of my body. You can touch the parietal lobe, on the outside of your head, if you begin by placing your fingers above your ear and move your fingers upward.
My head was held in place with three screws drilled into my skull like an Ikea bookshelf. These are my “divots,” I call them, the deep indentations left by the screws that threaded through the clamp that was bolted to the operating table. These indentations surround a large C-shaped scar across the top of my head, where my head was shaved, scalp cut open, and a large piece of skull removed. “Why is there a ‘C’ on your head, Daddy?” our youngest, Gideon, asked one day, tracing the scar with his index finger.
Adam’s craniotomy scar: “Why is there a big ‘C’ on your head, Daddy?”
I watched a monitor in front of me displaying the surgeon’s gloved hands while they cauterized and cut away a pink-brown brain tumor, while giving me commands to wiggle my toes, raise my arm, recall these numbers, and report the sensations that traveled up and down my body. The surgeon stimulated my brain with a small electrode that reminded me of a Bic ballpoint pen, and after each report or involuntary movement, the surgeon placed a small label on my brain to map the functional areas to mitigate permanent damage, while they removed tumor. My brain was dotted with these small labels, like what you’d find in an anatomy textbook.
Adam post-surgery May 26 or 27, 2016
“This is just as fascinating as I thought it would be!” I reported to the nurse, who called out to the waiting room on the hour during surgery, so that I could report my status to my family. “That sounds like my Addy,” Whitney replied.
Imagine that you were in that waiting room, while your partner or spouse lay on that operating table. When I recognize five years after my craniotomy today, it also means recognizing five years after Whitney became my caregiver. Our lives individually and our lives together would never be the same after they rolled my gurney away from Whitney in a small, pre-op room to take me to surgery. Acknowledging that I am a five year brain tumor survivor means acknowledging that Whitney is a survivor, too, and while you may daydream of the future when you and your partner grow old together, Whitney plans for a future of increasing care responsibilities.
A&W before an MRI scan, sometime in 2020. #AandWTumorTakedown
Two or so weeks after surgery, on June 10, 2016, Whitney and I were picked up in a medical transport van from the inpatient acute rehab facility, where I was (literally) under lock and key: a locked brain trauma unit, where I’d trade my freedom for the benefit of intensive occupational and physical therapy, under the care of a team of rehab therapists with a specialty in recovering function lost after traumatic brain injury, stroke, aneurysm, and, yes, brain tumors. The van dropped us at the Indiana University Neuroscience Center, where our neuro-oncologist gave us the diagnosis: glioblastoma.
Adam, inpatient rehab, June 2016
“But you have many positive prognostic indicators,” my oncologist said.
That was a more cheery delivery than the radiation oncologist who asked plainly a couple weeks later, “You do know that you’re going to die from this, don’t you?”
Adam being set-up for a daily radiation therapy treatment, late-Summer 2016
I am one of the lucky ones, but that luck is due only to random biological mutation that conferred a slightly better survival profile thanks to certain genetic markers that renders my tumor more responsive to treatment than those without the same mutations. But being lucky in this category of generally unlucky people who developed brain tumors is small comfort, and it’s important to be clear what we’re talking about: I was 34 years old at diagnosis, and I turned 39 years old this April. When we celebrate five years with glioblastoma, we’re celebrating that an otherwise healthy male lived to his late 30s. And so, on the one hand, yes, I’m one of the lucky ones, and that’s worth some bubbly, but I’ll be back in the MRI machine in July.
The crew, Fall 2020, Noah’s out of patience
Only 5% or so of GBM patients live to see this milestone. Most of my friends in the brain tumor community have racked up multiple surgeries, compared to my one. I’ve lost many friends to this disease along the way, and while those who survive them lament their passing after mere months with the disease, I go on living, now for five years. I’m the outlier, and it’s hard to feel too celebratory, when every week or two I hear that someone else in my growing social network of patients and loved ones has died from GBM.
Survivor photo, National Brain Tumor Society’s Head to the Hill; May 2017
Yet I acknowledge that those of us with longer term survival owe something to our community: to stand as a beacon of survivorship. It’s not hope that I have for the future, which is not to say that there is no reason to be hopeful, but hope doesn’t keep me going, that motivation comes from a call for usefulness.
“Be useful,” my grandmother often said. That’s what I am up to these days, trying to be useful.
A&W Race for Hope DC, a 5k to benefit brain tumor research, before National Brain Tumor Society’s annual advocacy event in D.C., Head to the Hill. May 2017
I’ve wondered for a week what I’d write on this day, but just as senseless as this disease is, trying to make sense of it today escapes me. Something else is less opaque: How can I be useful? And so, I’ll put one foot in front of the other, well, maybe one cane step, in font of one foot, in front of the other. Whatever it is that each of us is facing, we don’t need perfect clarity to take the next, best step. Sometimes our thoughts drive our actions, and sometimes our actions drive our thoughts. I can wrestle with five years of survivorship – the joy, the anxiety, the uncertainty, the celebration, and the distress – and that wrestling is good. I can also hug our kids, thank Whitney, write a post, and keep showing up.
Whatever it is that we face, we don’t need perfect clarity to take the next, best step. I can acknowledge both the joy and distress of survivorship, with brain cancer, and I can keep showing up. #BTSM
Folks often ask me, “What’s my secret,” and I have in mind especially my newly diagnosed friends and their families. The biggest secret is that there is no secret: That I am young, that I am otherwise healthy, that I have access to healthcare and the resources to meet out of pocket costs to continue treatment, and that my tumor happened to mutate in a certain way to respond to therapy – those are the secrets, and each of those things are completely out of my control. It’s less secret than circumstance.
I’m so thankful to Whitney for all that she does, from working several jobs to being the only driver in our household. I’m thankful to my parents who are the surrogate second drivers for our boys’ busy activities and my appointment schedule. I’m thankful to my in-laws for the same, and I acknowledge for them that seeing Whitney’s life unfold to be one of caregiving cannot be easy. My siblings, my friends, my coworkers, neighbors, and my care team all deserve thanks for the support, and to those editors, conference organizers, and selection committees who affirm that giving me the chance to tell my story is important, thank you.
Theory meets reality in this post about two frameworks, or schemas, about illness and systems of belief. I get a little technical, but you may learn something along the way! I discuss sick role theory, standpoint theory, and what it means for a person living with serious illness. The take home message is that those on the margins of society, those with life-limiting illnesses, disabilities, and other social determinants offer a wisdom that often goes unrecognized.
A Sanctioned Deviance
Sickness is a form of social deviance. A “sanctioned deviance,” to be more specific. That was sociologist Talcott Parsons’s view in his “sick role theory” that he advanced in the 1950s. The sick person, according to Parsons, is subject to both rights and obligations. The rights that protect the sick person include a base assertion that a sick person is not responsible for having their illness and a general dismissal from performing expected societal roles and functions – the deviant aspect of the sick role. And yet, the sick person is bound by obligations that include the obligation to seek treatment, to get well, and to return to performing expected social functions -the sanctioned qualifier.
From Normal to Alternative Overnight
In the early months of my illness, I embraced sick role theory. This theory resonated with important characteristics of my identity: After moving from Arizona to Indiana, a coming home for our family, I felt out of place. (I was born in Indiana, but at four or so years old, we moved across the country for Dad to pursue an ambitious and noteworthy appointment in his career.)
My social context shifted significantly. My childhood in Arizona was shaped by late 80s, early 90s West Coast trends. Skater culture was big, and the typical clothing style, activities, and attitudes of my peer group in Arizona reflected California, owing to geographical proximity and regional climate. I represented this West Coast cultural setting, not by any deliberate or overt decision on my part, only as an extension of where we lived. Like basketball is endemic to Indiana, kids in Arizona naturally grew up skateboarding or rollerblading.
What was a fairly normal cultural context in Arizona was counter-cultural in Indiana. A “skater kid” in Indiana carried a lot more cultural baggage than in Arizona. I went from “normal” to “alternative” overnight, with a cross-country move. I harbor no regrets or resentment against mom and dad for their decision to move. I enjoyed a loving relationship with both sets of grandparents before their death in Indiana that wouldn’t have developed had we stayed in Arizona. Yet the labels, deviant, punk, skater, alternative, counter culture, were to some extent foisted on me because West Coast culture just hadn’t made its way to the Midwest when we moved. Our family’s relocation out-paced the trends. I remember when Pacific Sunwear, later “PacSun,” opened in the Greenwood Park Mall, and it was mostly just the same shit that was in any random department store in Arizona. Because I didn’t fit in accidentally, by high school, I didn’t fit in on purpose.
Why do I share this?
I’m recently 39 years old, and I’ve felt like a deviant for most of my life. Reading the sick role work from Parsons met me where I was, feeling so out of place. Out of place culturally, and with the diagnosis of glioblastoma, a rare disease with only one or two cases per 100,000 people, and an average age of diagnosis 20 or 30 years older than me, I was again out of place in the “disease space.” No doubt that we’re out here, and I’ve met many of us, but there are not many young-30s parents to young kids who get this disease.
A Liability
I gave a few community talks, telling my story, beginning in March 2017, not quite a year after diagnosis, and these events honed my skills and opened doors to giving bigger and bigger talks.
Adam rehearsing a community talk in 2017
I experienced one of the most significant professional accomplishments to date when I delivered my End Well talk in San Francisco in 2019. I recall a candid conversation with End Well Project founder, Dr. Shoshana Ungerleider, in 2018, after I applied to be an End Well speaker. The selection process begins more than a year before the End Well symposium, and together Dr. Ungerleider and I made a shared plan to periodically update her on my health status in case I wouldn’t be well enough to travel and give this talk. (Whitney traveled with me; otherwise, traveling and speaking would not have been possible. Thank you, Whitney, for everything, always.)
Adam giving his End Well talk in December 2019
After receiving the diagnosis, I worked hard to reconcile myself to accepting a grim prognosis, and Whtiney and I worked hard to help our kids understand, but that conversation with Dr. Ungerleider was one of my first experiences comprehending the professional implications of living with a life-limiting diagnosis.
I was the sanctioned deviant.
Over the past couple years, this theme recurs over and over. It’s a risk to book me for future speaking events. It’s a risk to accept me for nonprofit appointments. It’s a risk to place me in a job role that demands increased responsibilities and the performance of required hours and tasks each week. (I write this, having recently accepted a new job role, knowing, even, that some of the folks involved in that decision may be reading now!)
I discovered in the past few months that I am a risk to potential publishers of my work because without a completed manuscript in hand and the usual author expectations to promote a book through readings, events, and writing promotional articles, I am an uncertain investment in an already difficult market. This places me in the odd circumstance that the thing that makes my work so important is the same thing that makes it less attractive.
Shared Cognitive Dissonance
A tragic irony of this advanced cancer diagnosis is that most the people I meet, both friends and random encounters with folks, say something to the effect of, I could get hit by a bus tomorrow! This is such a stupid thing to say, but I know it is well intentioned. The point, I guess, is to find some relatability in the illness, so as to feign some common ground of understanding. I get that. Life is fragile and precious, sure, and I see you, supporting me with the language and conceptual framework that you have onboard. I’m good. You’re good. I only ask that we keep in mind that most people don’t wake up each day wondering if today is the day that they’ll be struck down by a wayward bus, while I do wake up each day wondering if today is the day that I’ll have a catastrophic seizure, brain bleed, or some other event. Shit, I had a pretty bad seizure only a few days ago that Whitney described with raw honesty.
At any rate, that culturally we have this notion of unexpected death as a way to interpret serious illness, while we also shy away from taking risks on people who actually are going to die sooner than they should, is a shared cognitive dissonance. If your random risk of death is in a similar category to those with life-limiting illnesses than why subject the sick person to the greater risk/reward calculus? Now, in practical terms, I understand the difference here, but in the abstract, we find that that risk is a matter of degree, and mortality is universal.
Whitney and I live our lives out loud. We post regularly about living with brain cancer. This is no surprise. How many pictures have you posted about your pets, your kids, your dinner? Same here, documenting our lives, it is just that the normal for us is the daily struggle of a devastating illness, and while it is a feel good to get the likes on MRI scan days, life is exceedingly difficult in between, and within the past few months, Whitney and I have found it important to be transparent with not only the good but also the impossibly hard.
Adam and Whitney in Washington D.C. for National Brain Tumor Society’s Advocacy Event, Head to the Hill, 2017
But doing that, we’re taking our risk, to trust our friends and acquaintances to stay engaged; not turn away.
Worth the Risk
Truth is that I may not be able to maintain the new job role and schedule. That isn’t a declaration, it is only the relevant context. What does it mean for me, for my employer, if this new role turns out to be unsustainable? Might I be worth the risk?
There is a philosophical theory called Standpoint Theory that was first articulated and advanced within feminist philospohy. Standpoint theory takes a person’s perspective and social station as integral to understanding systems of belief and knowledge. The theory holds that marginalized folks are privy to understanding systems, power dynamics, and relationships in ways that those with power do not. This isn’t, or doesn’t need to be, controversial. I suspect that I have a better perspective on the Social Security Disability Income program than even the program designers and policymakers because I’ve had to navigate the program for our family’s livelihood, not as an abstract policy discussion at the Social Security Administration or in Budget Committee meetings. I know the policy up and down, this way and that, because I live it every day. That is the power of starting thought on the margins to inform the center.
What I have come to understand – and reject! – about sick role theory is that its interpretation of illness, its value judgment about illness, say, why illness is bad, according to sick role theory is this dismissal from societal functions. It is ultimately the loss of social and economic productivity that is the badness of illness, according to Parsons. The sick deviant is just that, a deviant, who may be excused from work, but that excusal must be policed because sick role theory takes economic productivity as a normative good, that is, a good that we should aspire to.
I am a liability to my employer. I am a liability to my nonprofit programming commitments. I am a liability to our family when I am at home with the kids and Whitney is at work. I am a deviant. I do not participate with the same productivity that I did pre-diagnosis and in ways that are commensurate with my peer group. As of just recently (last month), I depended on social welfare programs to support our family, and so not only do I not contribute with rigorous productivity, I am also an expense.
Am I worth the risk?
When we replace sick role theory with standpoint theory, we find that insight and wisdom come from the margins, and in a world designed by those who historically have held power, what you may characterize as taking a risk on me, and others systemically pushed to the margins, is the wisest investment that you can make.
I’m here to tell you that you are not a liability at all; instead, your marginalized status gives you perspective that those in the center would never achieve without you.
@adamhayden
What are the liabilities in your life? What liability do you present? I’m here to tell you that you are not a liability at all; instead, your marginalized status gives you perspective that those in the center would never achieve without you. This is why we must dismantle the systems that undermine and oppress, and instead, work to amplify the voices that power has sought to silence, but that, friends, is another blog post entirely.
“The concept of Existential Plight is not a mere metaphor, but a distinct phase of cancer to which almost all patients are subjected. Quite literally, it is a luckless predicament in which one’s very existence seems endangered” (Weisman and Worden 1977)
Stable isn’t as great as you think.
Stable is the best possible outcome.
Is the best possible outcome something to celebrate? Probably, yes.
Is the best possible outcome something that you hope for? Definitely, yes.
Is the best possible outcome a great thing? Only sort of.
Recently I’ve been telling cancer secrets. One of them is this: I’m not dead, and that’s weird. Here is another, I don’t really like talking about MRI results, and I suspect that I’m not the only one who feels this way. It is difficult, if not impossible, to imprint on others the what-it’s-likeness of cancer, in my case, brain cancer.
Portion of Radiology Report for MRI, 4/5/21
As of 10:41am EST, April 7, 2021, 401 Facebook friends and followers liked my status update reporting that our MRI scan on April 5, 2021, indicated no recurrent disease. This result is, you guessed it, the best possible outcome. And thank you to our social network for wrapping us up in your arms and embracing our family.
What is recurrent disease? In the setting of cancer, it is a disease that has grown back after treatment, also called recurrence. Brain cancers like glioblastoma are understood to recur at an extremely high, near universal, rate. Glioblastoma is very treatment resistant, and this is even more so after recurrence. Many of our trusted treatment modalities like radiation therapy and chemotherapy damage DNA, and this DNA damage kills cancer cells, but it comes at a cost: chemo- and radiotherapy are associated with additional cellular mutations that could make recurrent disease even more recalcitrant; more treatment resistant. The newly diagnosed survival rate for brain cancer is already grim, and survival rates for recurrent brain cancer plummet.
And so, those of us in this patient population endure MRI scans on four, eight, or twelve week intervals to monitor our disease and hopefully catch recurrence as early as possible to increase the window for early intervention or clinical trial enrollment. Lower grade brain malignancies may have a slightly more optimistic prognosis, but even with the lowest grade brain cancers and non-malignant brain tumors, MRI scans are routine, if only once a year, rather than once or twice each quarter.
No evidence for recurrent disease is the best possible outcome. It is something we celebrate; something we hope for, but it is not as great as you think.
The distress of these scans cannot be overstated. I have coped with scan anxiety, scanxiety, by reminding myself that whatever is happening inside my head is happening whether we look or not; the MRI is only a peek inside the window, but it doesn’t change what is going on inside. And yet, it is challenging to not live or die by brain scans. The only other real measure we have for monitoring our disease is by functional measures, like fatigue, language, memory, and physical impairments, neurocognitive performance, and other symptoms and adverse effects. Many clinicians prize thorough physical and neurological exams with as much credibility as MRI images.
“How do you know how I’m doing?!” a friend asked her neuro-oncologist after they admitted that they typically do not review her scan until during or after the visit. “Well, I look at you!” the physician replied. This common sense answer is not altogether satisfying when there is so much protocol packed into the MRI procedure, but it’s good to remember: For us patients, our functional health and quality of life is what we’re interested in. When we first met my neurosurgeon, he told us, “I cannot believe the person who I’m talking to right now is the same person whose scans I just saw in my office. He was struck that despite the large mass in my brain, my cognition seemed otherwise intact.
Still, intellectually accepting a piece of clinical evidence like this one–that scans and function are not perfectly correlated–is not the same as accepting something with your entire body, and this is important because anxiety is in the body. The thinking brain tells us that an MRI scan is a diagnostic tool to aid clinicians in treatment planning, but the MRI procedure as an experience includes a hard table, a cold room, an IV wired up to an auto-injector that rapidly pushes contrast agents through the bloodstream to generate images of the vascular system, that creates pressure in the veins, a strange taste in the mouth, and a cooling sensation throughout the body; and the loud noises, the revealing hospital gown, all of this is the anxiety of a scan that has nothing to do with what you think about it; it’s what you feel about it. And the existential threat of brain cancer is the threat that triggers your fight or flight, but the threat isn’t visible, and there is nothing to fight against or flee from, except your own body.
This is the secret. I sort of disdain the public congrats for stable scans. I understand how cynical and crass this may strike you. No doubt that all 401 of you liked our update authentically, with true joy and celebration. And we feel that, too, but here’s the thing: “No evidence of recurrent disease” may soothe the thinking brain, but what cancer patients are feeling cannot be healed with words on a page, but only through comfort and safety for our bodies. Maybe this is why virtual care delivery is difficult for many patients, and certainly it is why COVID hospital precautions to mitigate risk through limiting visitors feels so cruel, our bodies are left wanting for a healing touch.
My therapist begins each session by directing me to place my feet comfortably on the floor, to feel the weight of my body in the seat, and to notice the sensations, beginning with the top of my head, and scanning my body to the tip of my toes. When your very existence is endangered, few things may help you feel more human, more grounded, more alive, than checking in with your body. My advice: Do not let a scan, whether good or bad results, stop you from fully living in your body. Health and wellbeing has little do with scan images.
“How are we going to live four more years like this?” Whitney asked me around our fourth “cranniversary” (the anniversary of my craniotomy, the surgical procedure to remove my brain tumor).
I shrugged. How will we?
My surgery occurred on May 26, 2016, and my official date of diagnosis was a couple weeks later, on June 10. Now that the calendar year has turned over, we see my five-year mark approaching on the horizon. (Expect another, likely more reflective post then!) By the population statistics, less than 10% of glioblastoma patients live to see this milestone. My radiation oncologist who congratulated me on becoming a long-term survivor at my 18 month follow-up would no doubt be surprised to see not only that I’m still kicking, but that I maintain part-time work and a pretty robust writing and speaking schedule. But Whitney was right: How do we live another four or five years like this?
Adam poses with his fourth “cranniversary” cake on May 26, 2020. Cake by Moist Cake Co.
The Brain Tumor Social Media (#BTSM; @BTSMChat) organizing team met for our quarterly meeting this past weekend. We gather every few months to brainstorm topics for the following monthly Twitter chats. Each meeting begins with an informal check-in, “the feels.” Our team has grown over the years, and these days our members include four brain tumor patients, a former caregiver to a late spouse, and a neuro-oncologist. Together, the seven of us represent pretty diverse perspectives, yet we traverse shoulder-to-shoulder across the same common ground, rocky and turbulent as that ground is. Many of us lead support groups, are involved in patient care, mentor and assist newly diagnosed patients and their loved ones, and deliver talks and lectures. We are each other’s support in many important ways, and our meetings, plus our group text thread, serve as the vehicles to say the honest things that we may not say publicly.
I’m not dead, and that’s weird, but I can’t say that publicly, without also putting in a lot of effort to unpack those words so that they don’t alienate others.
Adam during the #BTSM quarterly meeting in January 2021
Brain tumors and cancer are devastating. This maybe goes without saying, but often things that are so obvious are assumed to have shared meaning, and so we don’t tug those stubborn details into the light to discuss them.
All cancer is bad, and there is no such thing as a “good” brain tumor, we often say in the brain tumor community. There are layers of nuanced meaning packed into the brain tumor experience. Some people are given a prognosis of 10, 15, even 20 years; others hear that they may only expect a year and a half. Prognosis is a statistical analysis based on tumor size, placement in the brain, molecular, or genomic, characteristics, and a host of other confounding factors. When it comes to outcomes, the ranges of survival are every bit as confusing, if not more so. Now, with only months until my fifth anniversary, I’ve sadly watched many friends die from their brain tumors, and yet here I am, blogging away, co-moderating Tweet Chats, wrestling with our kids, and masking up to grab a couple beers with friends when able.
The truth is, brain tumors are more than just aggressive cancers, they present an existential threat. Seizures and headaches, fatigue, my sensorimotor impairment that requires the use of a cane anytime that I’m out for more than just a few paces here and there, from the front door to the mailbox or the parking lot to a building entrance. I am beginning to notice more short-term memory loss, and I’ve grown more irritable and impatient, either that’s me or the meds. Others face many more significant impairments than I’ve listed here: language processing issues, cognitive decline, near complete memory loss, and confusion.
The worse the symptoms are for others, the more distress creeps in, I think, “What’s in store for me?” And when friends die, “How long have I got?” These are probably the obvious difficulties of living with serious illness. The more insidious stuff is the bewilderment of life. I’m not dead! And that is weird! But it’s also a secret that I keep to myself.
Newly diagnosed patients and their loved ones have come to trust my voice, and others like mine, and the last thing we are looking for on the start of a journey is someone telegraphing from miles ahead, reporting that the path is treacherous. For our closest loved ones, the caregivers, they know our truths, and we know theirs, though they do not always align.
How will we live four more years like this?
But as those concentric circles expand, those other loved ones who are involved with our care but not the daily grind, and further in the ripples of our impact, extended family and social media followers, maintaining a positive outlook, giving hope and inspiration, calling for and expecting thoughts and prayers, these are the roles we play and anything less is threatening to the narrative that society has constructed around illness.
The rally cry is to fight, to battle, to be a warrior. “Do not go silently into that good night!”
We learned nearly five years ago that I could expect a year and a half. A doctor who oversaw the course of my radiation congratulated me on long-term survival at my third six-month follow-up: 18 months (we meet much more frequently with my oncologist). “I hope to see you again in another six months!” I exclaimed at the conclusion of that visit. “All we can do is hope,” he replied.
This isn’t a narrow miss or a near-death experience. This is one long, protracted journey toward the completion of my life, and rather than create safe spaces to interrogate the reality of our mortality, build out an infrastructure of care that places physicians, social workers, chaplains, and patients together to discuss end of life goals as a standard approach to care, or legislate social services solutions to free patients and loved ones from onerous disability paperwork and guarantee financial security from the onset of serious illness to the completion of life, no instead of that, we place the preparation of advanced care planning, disability application, and financial planning squarely on the shoulders of patients and their caregivers and loved ones.
Patients are told not to throw in the towel, don’t lose hope, hold out for the miracle, but when we frame cancer survivorship by a relentless battle, we award the wrong priorities. Instead, we should celebrate reconciling the plans that we had for our lives with the reality that we may need to adjust our goals. We need to turn our attention toward grieving the life that is not. Maybe the miracle is not the life saving treatment breakthrough, but instead, it is the breakthrough of fresh perspective that asks honestly, “How would I like the completion of my life to look?” And not, “What I can possibly do to extend it?”
In the first couple of years after diagnosis the goal is survival. Recover from surgery, tolerate chemotherapy, arrange transportation for daily radiation therapy, and accept a life-limiting illness. But if we survive the first several months or a year of acute treatment, we learn that all the protocols are only to do that: facilitate survival.
Survival isn’t living; survival is not dying. Life is agency, being responsible for one’s own outcome, life is security and safety, life is space to explore living with illness, quality of life is answering the question posed by psychiatrist Jonathan Adler, “What does life mean to the person who’s living it?”
I’m not dead, and that’s weird, so by my own definition, I’m surviving, but I’m in the pursuit of answering that question about life’s quality.
How do we live another four or five years like this? The truth is, I have no idea. You never put much thought into the first three or four years because you’ve been told that you’d be lucky to get that many. But having reached this provisional place of surprising survival, I suspect the answer lies somewhere in systems changes so that we can get in place better structures to support patients with terminal diagnoses. Beyond that, I think it’s important that we normalize these questions and begin to reward authentic confrontation with mortality.
Glioblastology 