Glioblastology

I Don’t Know How to Write about Brain Tumors

May 11th, 2022

I don’t know how to write about brain tumors.

I guess it’s both all about the brain tumor and has nothing to do with the brain tumor at all. There is no cleaving the tumor from the person, while it is also true that a person isn’t their diagnosis.

Like how life changes after a doctor tells you that you’re going to die, and then you call your family and friends and tell them you’re going to die, and you realize after a couple calls, here we are. Where’s the parking ticket to leave the hospital garage? Life goes on–life without you goes on–and that’s well and good, but also, what the hell?

Have you ever made breakfast with acute knowledge of your own mortality?

Whitney wondered less than rhetorically, “I’m grateful we’ve had these four years together, but how do we live another four years like this?”

She asked that two years ago.

I can’t point to just what it is, or, it’s a lot of things, but there is no Adam that exists before his diagnosis. Memories we may not hold, but the stories that are their surrogates are what is left of that man. Pictures in a Facebook album called, “The Dark Ages,” that includes a grainy picture of me wearing my hair in a man-bun, holding a Motorola Razr ©. Everything changes, and nothing changes at all. There is an idea I’m trying to get onto: It’s about the brain tumor and has nothing to do with the brain tumor at all. It’s about life, maybe.

Writing about my life is writing about the brain tumor experience. Here is what I mean: Our neighbors have three boys, like we have three boys, and each of theirs are spread out a couple years apart like ours–though, their stair-step kids are each a couple years younger than our stair-step kids. Anyway, their kids are learning to ride their bikes, and I say, “Oh before my diagnosis, I used to commute to work on my bike,” gesturing to the road bike hanging from the ceiling-mounted brackets in our garage, thick with dust and cobwebs. Is that a story about a brain tumor or a story about me? The bike mounted in the garage is about a brain tumor.

See, I don’t know how to write about brain tumors.

There isn’t anything that isn’t about brain tumors anymore. (That’s funny. It’s a double negative, like when the oncologist said, “It’s extremely unlikely that you will not have a recurrence.”)

It’s our life. It consumes me/us. When something becomes so all consuming, it ceases to be a discrete datum of identity and becomes the whole of biography. I am not sure whether I am part of the brain tumor now or whether the brain tumor is a part of me, but it’s feeling more like the former. I think my book didn’t sell because it was a story about a brain tumor, but not a story about me. When writing a story about you, the you that is more a part of the brain tumor than the other way round, requires that you accept the diagnosis with all of you, and I’m not sure I’ve done that. Radical acceptance, or something. I can speak ad nauseum about the brain tumor experience, but never cohesively into one whole that is me with a brain tumor. Always two stories traveling along parallel tracks: One story about a man and one story about a brain tumor, and the confounding thing that I cannot manage to impart on you is whether these are separate stories or one. My identity is fragmented. I think this is what my brother meant several years ago when he cautioned me to write about myself as a character and leave myself in flesh and blood out of it. But I am also hard-nosed about this. I am the story about a brain tumor. I can’t get the story about me back out of it. The yeast is activated.

I want carte blanche to be a dying person, but I want to be taken seriously when I make plans for the future.

I want you to know that. Or, I wish you knew that. You expect me to be talking or writing about brain tumors. It’s on brand for me to do so. But I want you to know that with a fragmented identity, I can’t just lop off the part that I don’t like. Free will is the ability to choose to do otherwise, and I don’t feel free from this disease. I think I’m asking you to do the impossible–I’m asking myself to do the impossible: Have a brain tumor, but don’t let it define me. Don’t pity me, but know that I’m altered more each day. I want carte blanche to be a dying person, but I want to be taken seriously when I make plans for the future. It’s all about the brain tumor and has nothing to do with the brain tumor at all.

I don’t know how to write about brain tumors, but I don’t know how not to, either. I don’t know how to keep living like this, but I don’t feel free not to either.
Return of the Tumor Takedown Tailgate

March 31st, 2022
We could not be more excited to announce the return of the #TumorTakedownTailgate to benefit National Brain Tumor Society! We are so appreciative of your past support, and we invite you to join us on Sunday, April 24, 2022, to celebrate the return of the Tailgate and a chance to be together as the ONLY brain tumor specific fundraiser in Indiana! We are a community excited to be united to defeat brain tumors once and for all. We look forward to seeing you in April. Read on for details or go directly to our tickets page or event donation site.

Folktale Greenwood

Brought to you by our friends at Revery, this year’s event is hosted at new event space, Folktale Greenwood, adjacent to the Revery property, in Old Town Greenwood, Indiana. This beautiful 1860s home in Greenwood has a storied history! In fact, an underground tunnel allegedly connects the speakeasy bar at Revery, Bar Rev, with the home that was used to sneak alcohol during Prohibition! We haven’t confirmed that story, but it sounds pretty damn good to us! Chef/Owner Mark Henrichs and team have worked tirelessly for more than a year to renovate the large home and grounds, restoring original features whenever possible, like the historic crown molding, large staircase, and hardwood floors. Hosting the event at Folktale offers access to the beautiful grounds and indoor space as needed. This is the perfect space to be together this Spring. Huge thanks to Mark for hosting the TTT and welcoming us again in 2022.

Food, Drink, Entertainment, and Auction

Our good friend J. Elliott is already on board to play at this year’s Tailgate. All who know him love Jay, and he’s been a friend of Adam and Whitney’s since at least high school. To those who don’t know him, Jay is a top notch singer songwriter with accolades, awards, and gigs all over town. His covers are pitch perfect, and Jay’s original music is so good.

We’re working through food and beverage right now, but we know that Revery’s food truck, Dashboard, will be involved, and we have confirmation from Jack’s Donuts for a donut table. We’ve already reached out to Mashcraft Brewing. You’ve been before, you know we always put together an incredible line up. Indy CD and Vinyl have an incredible donation for the silent auction that we’re not teasing just yet. We’re also working with past auction donors like Indy Eleven.

Tickets and Social Media

We’re pricing tickets at $40 again this year. Tickets always include a couple drinks, food, access to the music and auction, and we always connect the event to the mission of National Brain Tumor Society so that you see how all the proceeds from your ticket purchase and donations help extend and enhance the lives of people living with brain cancer, like Adam!

Please be sure to follow us on these platforms, and we’d love it if you share the event page with your social network. Feel free to forward this email too! Find us on…
In addition to tickets, or in case you can’t make it, tax deductible donations of any amount can be made to our dedicated Event Website!

Sponsorship Opportunities

If you personally or your organization are interested in sponsoring the Tumor Takedown Tailgate, sponsorship packages begin at $500, and all tiers include brand displays and ticket packages. Higher tiers include the opportunity to have a table at the event and optional open mic time. Reach out the team by replying to this email for more information. In-kind donations for auction is also accepted. Be in touch!

Event History

Launched in 2018, to date the TTT has raised over $40,000 to benefit National Brain Tumor Society! Pausing for COVID, we are making our return in 2022 to re-establish our annual event. Co-founders Adam and Whitney Hayden, with dear friend Lindsay Eichelman, and chef/owner Mark Henrichs are the core planning team. If you are interested in supporting planning efforts or providing a media or promotional opportunity, please do be in touch!

About Adam and Whitney #AandWTumorTakedown

Adam Hayden was diagnosed in June 2016 with an aggressive type of brain cancer called glioblastoma. Adam was given a prognosis of around 18 months. This year, he celebrates 6 years of survival! Adam and Whitney are tireless advocates for the brain tumor community, hosting fundraisers, participating in advocacy events, and supporting newly diagnosed patients through one-on-one support. In 2021 Adam was invited to join the National Brain Tumor Society Board of Directors, where he uses his experience to contribute strategically to the organization to be sure patients and families are center to all NBTS does.

About National Brain Tumor Society

National Brain Tumor Society unrelentingly invests in, mobilizes, and unites our community to discover a cure, deliver effective treatments, and advocate for patients and care partners. As the largest brain tumor nonprofit in the country, NBTS is a major investor in cutting edge brain tumor research, and their programming offers patients and families support services, like patient navigation services and their monthly virtual support group that Adam co-facilitates.
I’m Telling You for the Last Time

February 21st, 2022

Sometime in the early 2000’s I was in a Ford Aerostar with four other dudes, touring the midwest and East Coast. The band on tour with us tipped us off to the solution for long drives: Stand-up comedy albums (pre-podcast days). In the handful of CDs (cassettes?) they loaned us: Seinfeld’s 1998, I’m Telling You for the Last Time.

I’m sure as shit no Seinfeld, but that idea tucked itself into my pocket and rode along for the past couple decades. Burn out before you fade away type shit. Now it’s my turn.

I’m telling you for the last time.

Five years of material, and it’s time to let go. You may know some of it; I hope you do. Anyway:

I’m telling you for the last time.

The healthcare system strips patients of their personhood and observes the body with a clinical gaze that pays no mind to our identities and certainly not our distress. In fleeting moments of restorative justice amidst toning alarms and proning patients, a healer catches your eyes in theirs and you are seen.

But mostly it’s wristbands and gowns, murmurs outside your inpatient door, and rounding physicians so busy they carry their sealed tupperware lunches into the room to take a look at your incision.

It’s not the doctors, it’s the system, and when we see each other, doctors and patients, the admins are in trouble. May it be soon.

I’m telling you for the last time.

We can learn so much about patients without even meeting them (us). But to know a disease is not to know the person who has it. And we’re rich on data but short on humanity.

I’m telling you for the last time.

I don’t care about your language: I learned only the jargon so that you would hear me. Maybe it’s time to use ours: we speak in experience and emotion.

I’m telling you for the last time.

I’ll dismiss your suggestion that I wait for our visit to hear the results: I’ll read the test report when it’s posted, because it’s my data; my body. I don’t need your paternalism, I need your partnership.

I’m telling you for the last time.

I don’t care what you think about Dr. Google: I read everything I can because it’s my life, and I won’t allow your distrust or skepticism of my capacity to absorb medical information stand in the way of pursuing my care as an equal member of the team.

I’m telling you for the last time.

You don’t know who I am in a gown, and I don’t know who I am in a tie and button down, but you make me wear both, when I’m inpatient and when I’m advocating, us patients have to wear a uniform because our power is a threat. I’m too damned tired to keep up the act. You’ll see and hear me for my wisdom, not my formality.

I’m telling you for the last time.

You sequenced my disease thirty years ago, the one I share with thousands of others, to revolutionize medicine, but genomic sequencing is a luxury, not a standard of care, and all my friends are dying. There is death in the hype; death in disparities.

I’m telling you for the last time.

Your tailored scrubs and contrast Nike trainers, a few quick keystrokes and a joke with your peers, while you fluidly navigate the halls of the ill. My hairy legs and awkward gait, uncertain and unsure. Information is currency, and patients are impoverished.

I’m telling you for the last time.

I’ve honed my material for five years, and I’ve had a good run with it. All of that material you’ve heard: here and there, this talk and that, roundtables and panels, guest talks and presentations, op-eds and articles, filmed interviews and vignettes, five years of my life drafting, crafting, revising, delivering: it’s exhausted, and so am I.

I’m telling you for the last time.

Whatever I wasn’t brave enough to do before got buried in the traction that kicked up mud while the machine lurched forward. Advocacy is the product we sell. And my best work is a compilation you’ll find sooner or later. I’m proud of the work, but for my health, my ability to transform–or to reclaim, the middle finger of my skater punk youth–my liberation from the smiles and inspiration, it’s time to smash a guitar.

Thank you to everyone who gave me the stage to work that material. It was born on this blog in October 2016, when a naive 34 year old with a terrible diagnosis took to Facebook live in an Optune cap in my parents’ bedroom, after we sold our condo and turned our lives upside down. It’s time to let those memories be glossed by the nostalgia of time marching on and work the new material of long-term survivorship.

Five years of brain cancer, from diagnosis to major milestones: I’ve told that for the last time.

You can’t keep creation down, and something new, something fresh, something from a man who will turn 40, when his death was supposed to be at 35 is agitating.

Hang around for the thing I’ll say for the first time. You can’t live with brain cancer and stay safe, so let’s take risks.

More soon. 🤘🏽 -a.
What Does Christmas Hold for the Ill Body?

December 25th, 2021

To be sick at Christmas is a bummer.

Sick with COVID would be worse.

To be chronically ill at Christmas carries several more considerations like continuous glucose monitoring or crutches and canes.

And to be terminally ill, or ill with an incurable and life-limiting diagnosis, “casts all social interactions in the shadow of illness,” Havi Carel wrote.

Aging is another category we might reflect on, and aging, especially if aging alone, even if by choice, I would think is distinctly challenging.

Some of you reading may be widowed, and the loss of a loved one opens a gulf that no vessel can navigate without having been through it. Our care partners (caregivers) are here, too, and they are burdened with the weight of illness that is a yoke not often shared.

What acute illness, chronic illness, caregiving, and grief, share in common is an embodied distress. A distress that is something greater than the sum of its symptoms. The description of embodied distress is not fully exhausted by the description of events happening. It is an emergent thing. Like the neurons and glial cells in my brain give me consciousness, but those individual cells aren’t conscious themselves in the same way that I am.

Emergent.

Distress is like that.

Embodied.

A description not fully exhausted by the way things are. We feel it. It hits differently than big meetings with the boss or preparing dinner for a visit from the in-laws. It’s not, “I’m stressed out today”; instead, it’s, “My heart is racing, I’m sweating, and short of breath.” The distress I’m trying to get onto is that sort of thing; that sort of embodied thing. Something visceral that includes those symptoms but isn’t merely a list of the individual issues, it’s the greater state that arises from all of those particulars taken together.

Illness, stress, burden, and burnout are states of an ill body, and I think each of these are with us always, in different degrees, each the same kind of thing, if that makes sense. The same sorts of things, kinds of things, that’s what we share, and only by the degree of intensity of presentation do we find the arbitrary line that we’ve drawn between the sick and the well. While maybe my body is sick in a technical sense because it can be viewed under a microscope, in an MRI machine, genetically, and given a diagnosis. The confluence of the outcomes of those studies produce a pathology, a discrete state defined by certain variables, that is sickness, but states of an ill body are not unique to sick people! Distress is a feature of the ill body, and after two years of chronic stress exposure during a pandemic entering its third year, I suspect that many of our bodies are in this ill state.

I want to ask, What Does Christmas Hold for the Ill Body?

It’s an embodied thing, too: Christmas. Smells of candies and coffee cake. Crinkling paper and secret Santa. Hugs with masks and “What’s your vaccination status?” We are buoyed by our family and lifted by our friends on FaceTime or face-to-face.

We forget ourselves for a moment suspended in time in a snow globe secluded from a harsh world, and we celebrate together with family, biological or chosen. Some rejoice in the birth of their Lord and others celebrate a reason to rest.

What does Christmas hold for the ill body? Affirmation you are loved, a warm blanket, a text from a friend. A day in the year that everyone feels something different, but everyone feels. An embodied thing. An emergent thing. That is Christmas, and my ill body gets a reprieve from the demands of regular life.
A Curious Place: Cancer after a Milestone

June 17th, 2021

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.