Glioblastology

The Thief of the Present

September 12th, 2022

When I spoke with my palliative care physician about a referral to a mental health professional, my doc said they knew just the person.

A little scene-setting never hurts: The palliative care offices are tucked neatly between Senior Care and Optometry on the sixth floor, overlooking a commons area between the county hospital where I receive services and the children’s hospital across the green space.

The towering glass facade of Eskenazi reflects the city back onto itself on the near-West side of downtown. The reflected cement and steel city outside these futuristic, ten stories of tinted glass signals the bold proclamation that all deserve access to the best care in the best possible setting.

Checking in for appointments at the front desk greeting visitors as they step, roll, or shuffle from the “green elevators,” I am asked, “Optometry?” “Palliative care,” I reply. I am handed the clipboard and directed to door D. I glance while I walk to see “Senior Care” in narrow, sans serif font mounted in sharp black text on the clean, white walls. Diagnosed at 34 years old for a disease with a median age of diagnosis of 64, sitting in the Senior Care waiting area brings a grin to my face.

A few questions into the anxiety questionnaire, I snort with laughter. The GAD-7 asks the survey respondent to circle the number corresponding to the prompt: “Feeling afraid as if something awful might happen,” ranging from “Not at all” to “Nearly every day.”

Something awful might happen? Something awful did happen! I have fucking terminal cancer!

“Most people with cancer feel like something awful might happen, so we take that into account when scoring,” my mental health professional reported back while I took at least half of our first session to provide the Director’s cut commentary to my anxiety and depression questionnaire reponses. In fact, whether I always want to hear it or not, telling me just how unremarkable I am seems to be my psychologist’s prime directive! I mean that both to be funny and serious. I benefit from a kind but firm level-setting that reminds me while we each are unique snowflakes, there are only three phases of H2-0.

So that there isn’t a question: While my surgeon and oncologist have kept me alive, it’s this clinician who offers healing.

Afraid that something awful might happen is the lens through which many of us cancer patients probably see the world. It’s the attitude that I’ve adopted, or at least adapted to having. If not fear, acknowledgement that something awful might happen. This feels like a necessary awareness. It’s floating around somewhere with the scanxiety we feel before routine MRI scans, like my last one on August 22, 2022.

You have an awareness like this, too. You love to tell us cancer patients about it: “I could get hit by a bus tomorrow!” I.e., “I fear something awful might happen.” Of course, that’s not really the same. The bus metaphor is wholly unhelpful. It centers you in the attempt to comfort me. It projects your awareness of life’s uncertainty onto my very real certainty of facing an existential threat. If we were at the arcade playing Frogger you may say, “I could get hit by a bus!” I’d say, “Me too!” But when you’re talking to me about the bus, what you mean to express is that my unexpected and serious diagnosis has given you reason to reflect on the precious nature of life, and you should probably just say that. No bus needed.

My recent scan was stable.

It’s taken me this damn long to tell anybody that news outside of my close circle. And don’t get me wrong, it’s good news! So why then has it been so tough for me to let it out? Whitney and I posted our usual MRI selfie. The scan went according to protocol. I met with my oncologist. What’s the big deal about throwing up a quick Facebook post, appreciating the likes, in turn, liking the comments, and we can all move on with our lives?

The difficulty with me telling you the news of my stable scan is grounded in this: We can all move on with our lives. In fact, the harshest (but most liberating) lesson that each cancer patient must learn, bigger than that, the lesson taught to all when we have the good sense to pay close attention to our mortality is that brutal and freeing truth: Life moves on.

The liberation comes through acceptance that our friends, family, jobs, soccer clubs, and microbreweries don’t depend on us for their survival, hell, even for their success and joy. That all are sad in our passing is expected. The liberation comes when we choose to be passionate and powerful in the present moment because with or without us, life moves on. When we accept that, and I mean truly get it deep in our bones, we strive for a just world that liberates all to be passionate and powerful in their present lives and speak against those who would deny others this power. True power uplifts.

But the acknowledgment; the fear. We become paralyzed. We put off sharing otherwise good news.

In the gratitude of good news is the fear that something awful may be coming to spoil it. We begin to mitigate our due joy for fear of it slipping through our grasp. We mute our celebration and measure our smiles. We’ve dropped enough jaws at medical conferences and waiting rooms with our long survival that we dare not tempt death with loud applause.

Feeling as if something awful may happen.

The could-be has robbed us of the is. The possible is a thief of the present. This has all been hard to see, but thankfully, I’m neatly tucked in between Senior Care and Optometry.
My Sabbatical Year: Release and a Vision of a Just Society

June 10th, 2022

The Sabbatical Year

It’s my shmita year. My sabbatical year. My year of release; a year to let go. Curious? Confused? Intrigued? Smiling? Read on.

This month, June 2022, June 10 to be precise, marks six years after I was picked up by a medical transport van from the “brain trauma unit” at an acute inpatient rehab hospital on the northside of Indianapolis, with Whitney, to attend our first office visit with my neuro-oncologist, nearly two weeks following surgery. My significant motor impairment following brain surgery landed me in a rehab hospital to relearn how to walk, bathe, dress, and feed myself. We knew the tumor was large and appeared “mean” (my surgeon’s words), but we hadn’t yet received the official diagnosis–the pathology.

On June 10, 2016, we heard the word glioblastoma for the first time. This arbitrary date serves as a surrogate marker for when I “got” brain cancer, and so we recognize this date as significant. In truth, both the imaging and my surgeon’s perspective suggest a non-malignant brain tumor had been growing for months (years?) that ultimately underwent a “malignant transformation” to become an aggressive malignant brain tumor.

Patients identify different dates of significance to revere their diseases (In a Kierkegaardian fear and trembling sort of reverence). For some, the date of surgery, often a craniotomy, marked by a “cranniversary” each year. For others, it is the date of diagnosis. Others, still, may point to their first seizure, or the day they went to the Emergency Department with a headache unlike any they ever experienced. Consistent with the devastation of this disease, too many patients die before any significant date returns on the calendar, and it is the date of death that sets a new rhythm to life.

The common thread is the significance of a date–not the date, but the significance of time: time passed; time remaining.

Regular readers may have picked up on my agitating in my last two posts. “I’m Telling You for the Last Time” carried a sort of urgent finality to it. The next post, “I Don’t Know How to Write About Brain Tumors,” shared a struggle for identity. These posts, as has this blog done since its inception, is a protracted balancing of two competing attitudes: The urgency of the moment when the future is uncertain juxtaposed with a slow awakening to life and what matters in the midst of its end. The former calls for reaction and the latter, for response.

My Shmita Year

The shmita, or Sabbatical year, is a tradition among the ancient Hebrew people, with contemporary analogue. The so-called Sabbatical year, the year of release, like most of Jewish tradition, finds time, neither place nor edifice, to be of central importance. The six days of creation, and the seventh for rest. Building a sanctuary in time is how Rabbi Abraham Joshua Heschel described the weekly Sabbath, or Shabbat, a 24 hour period of release from work. The shmita year is also on a cycle of sevens: seven years. Born of the agricultural society of ancient Israel, the Hebrew people were called to work the land for six years and let the land lie fallow on the seventh.

This month I embark on my seventh year of survival with glioblastoma. For six years I have worked the land of my disease, and now I let the field lie fallow. Coincidentally, in Israel, it is the shmita year, Jewish calendar year 5782, beginning September 2021 through year 5783, beginning September 2022.

The shmita year is not only a year to let the land lie fallow, but connected to the deep roots of justice and care for the poor and the other that is at the heart of people who wrote and are described within the Hebrew Bible, “In the Shmita year, debts are to be forgiven, agricultural lands to lie fallow, private land holdings to become open to the commons, and staples such as food storage and perennial harvests to be freely redistributed and accessible to all” (My Jewish Learning).

Contemporary movements within Judaism are applying the ancient Sabbatical year to new traditions and challenges: “Shmita, with its dual acknowledgment and transcendence of the agricultural and economic realm, offers an opportunity for social reset and renewal to the entire Jewish world – and beyond” (Hazon).

Hazon states plainly: Shmita is the vision of a just society.

In pursuit of a just society, I’ve found that I’ve traded my own pursuit of justice for to-do lists, the strange competitiveness for patient advocate grants and scholarships for selection in certain conferences, conversations with agents and editors about publishing work, and the sense that if you say “No” to one opportunity, whatever it is, you may not get the invite for the next.

In the commodification of people’s lived experience and capitalism’s pursuit of more, shmita is yet more powerful: “In a world of ‘get up and do,’ not everyone is equal; however, in a world of ‘rest and restrain’ everyone is equal. And this [equality] is the root of peace” (paraphrased from the Shmita Sourcebook and this commentary).

The Jewish Pastor’s Kid

I share family roots of both Christianity (Dad’s side) and Judaism (Mom’s side). I am a Jewish pastor’s kid. I say that with a grin because it probably gives plenty of cause for certain stripes of both Jews and Chtisitans to be perplexed, if not dubious. At any rate, it is the historical context of these traditions, the geopolitics of ancient Southwest Asia and Northern Africa that feature most prominently in its development, and the storied history of Biblical authorship that compel me to study and discuss. There is theology, good and bad, that falls out of the historical project, and the explicit and implied Christian anti-semitism that conceives of the Hebrew Bible only as a marker pointing to the Christian mesianic figure, Jesus.

A central theme that I identify in this history is liberation for all people. I see myself with a unique set of skills and life experiences: growing up in the church, discovering my Jewish heritage, studying in college and synagogue settings, committing myself deeply to justice, viewing the world anew as a disabled and chronically ill person, and recognizing that with white supremacy posing an existential threat to American democracy, the liberation of Jewish people in Christian spaces is one way to combat persistent anti-stemitism.

In the release from the work I have known, it is pursuing these themes that I view as part of my reset, and to take this work seriously, I need to negotiate certain trade-offs.

Rest and Release

I enter my seventh year with this disease with rest in mind. I am declaring an intention to step away from the blog for a time. I am not sure what that time will be. I’ll say this: Glioblastology began as a way for me to process my experience as a newly diagnosed person with brain cancer. The blog has transformed with me as I gained further insight and experience. Now, the time has come to lean into other facets of my life that could use continued study and internal transformation in service of a just society. I could be back here next week, but more likely, the rest will be longer.

Thank you for toiling with me for these six years. More posts will come, in time.
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.