Tag: survivorship

Brain Tumor Awareness Month: Recap of #BTAM 2023

May 20th, 2023
Going Gray in May

May is Brain Tumor Awareness month, and it’s been a busy one for us! With so much going on, I wanted to recap a few major events to share what advocacy looks like for our family.

I’ll share more about…
- The Tumor Takedown Tailgate
- National Institutes of Health: Neuro Oncology Branch
- Race for Hope: Washington D.C.
- National Brain Tumor Society: Head to the Hill
- Quality of Life Research Roundtable
- Roon: The most helpful place online for people navigating complex health conditions
I also pause to recognize that May 26, 2023 is my official “Crani-versary,” or the anniversary of my brain surgery (awake craniotomy) and resection of my primary brain tumor. I don’t want to share too much about this milestone in this post because I haven’t quite sorted through the complicated emotions, and I don’t want to take away from the community tone of this post to center myself and a personal milestone. My diagnosis anniversary is next month, June 10 (several days between surgery and official pathology/diagnosis), and you can expect that between May 26 and June 10, I’ll publish a post reflecting on seven years living with brain cancer, but for today, for this post, let’s keep it topical for Brain Tumor Awareness Month.

The Tumor Takedown Tailgate: TTT4

Our annual local fundraiser to benefit National Brain Tumor Society was a huge success, despite rain and even sleet–because Indiana in April, but the sun broke, and the huge tent and hard-working volunteers at Folktale Greenwood had no problem with accommodating the bad weather. We raised more than $20,000 to benefit National Brain Tumor Society, bringing our four-year total donations to $85,000!!

When we started the #TumorTakedownTailgate we had no idea that we’d create an anticipated annual event that connects our community and puts up these huge dollars for brain cancer research. I don’t want to get ahead of myself, but I can’t wait to bring us all together next year for TTT5 when I know we’ll push over $100,000 raised in five years to benefit NBTS.

Thanks again to Folktale (book your next wedding or event here), Dashboard Food Truck and Catering (eat your next meal here), Jack’s Donuts (snag your next breakfast here), Mashcraft Brewing (buy your next beer here, and invite me to join you), and Ramona (find this delicious organic wine spritz on your next beer run (B double E double R U N, beer run).

To Lauren Casey from RTV Indianapolis, thank you for your incredible emcee duties, Jay Elliot (book him for your next party or event), and Ben Tatum (catch him around town and ask him for a Green Day cover in my honor), you all brought energy, talent, and set the tone for the day.

Special thanks to my wife, Whitney, and our best friend, Lindsay, along with Chef Mark Henrichs, and literal superwoman Katie Henrichs for your partnership in pulling this event together each year!

Follow the TTT Facebook and Instagram to be first to learn about our next event.

NIH: Neuro Oncology Branch Visit

I was humbled to be invited with my dear friend, Kim Wallgren, Executive Director of the Collaborative Ependymoma Research Network (CERN) for us each to deliver guest lectures at the National Institutes of Health Neuro Oncology Branch. Drs. Mark Gilbert and Terri Armstrong are dear friends of the brain tumor community and world-leading clinician-researchers at the NIH. This was a truly humbling experience to get a tour of an NIH lab and meet with researchers, then deliver our perspectives on survivorship and patient advocacy.

We even grabbed a sandwich at Call Your Mother. My middle name is Jewish Deli, if you didn’t know.

Race for Hope DC

The Race for Hope DC is one of the largest brain tumor fundraising events all year! This 5k around the Capitol raised over $1.3M for brain tumor research this year alone!! It was awesome to be on hand for this powerful event, and it’s one of the few times all year when all of our social media brain tumor pals are together in one place! Here I am with two of my closest friends, Liz Salmi (middle; my fellow punk rocker) and Lisa O’Leary (right; my co-facilitator for our monthly support group, Brain Tumor Support Conversations).

Head to the Hill

Head to the Hill is the signature event for National Brain Tumor Society and our brain tumor community. We mobilize nearly 400 advocates from across the country to bring our legislative priorities to Congress through meetings with members of Congress from advocates’ districts and states. This year we asked Congress to…
- Fund the National Institutes of Health at $51B
- Fund the Department of Defense Peer Reviewed Cancer Research Program at $150M and maintain pediatric brain tumors and adult brain cancers are eligible research areas
- Co-Sponsor the Stop the Wait Act that will eliminate deadly waiting periods for Social Security Disability benefits and Medicare coverage for people facing serious and terminal diagnoses
What was most special for our family this year was having our oldest, Isaac (11yo), join us. Isaac joined Whitney and me to meet with our elected officials to tell our stories and make our asks to Congress. Isaac was amazing! By the end of the day he even led one of our advocacy meetings in the lead speaking role! One of the staffer’s asked Isaac on the way out if he was going to be a lobbyist. Without missing a beat Isaac replied, “Nope, a lawyer.”

It was such a proud moment to share my life of advocacy with our oldest son. I travel a lot for speaking and advocacy events, and it was so meaningful to share some of this with Isaac. He’s incredible.

Quality of Life Research Roundtable

A few years ago my pal Liz, you already met her above, invited me to join as a co-investigator in a project that she won grant funding to convene through the Patient Centered Outcomes Research Institute (PCORI). We called ourselves the Brain Cancer Quality of Life Collaborative, or BCQoLC, and our goal was to create a research network to define and innovate on interventions to enhance the quality of life for people living with brain tumors.

After years of research and a few published papers, the group took a further step this May by convening a multi-disciplinary research meeting hosted by NBTS. I can’t say too much about this event yet, but each person in the picture below is a patient or caregiver in the community with deep relationships, engagement, and influence in the field. I am humbled to call them friends. This picture is my Twitter timeline come to life!

Left to right: Adam, Lisa, Liz, Sabine, Emily, Jeremy, and Guy

Roon: Launch of the iOS App

Speaking of brain cancer quality of life, I met Rohan Ramakrishna, MD and Vikram Bhaskaran in 2021 when they approached me about a new platform they were building to transform the way medical information is delivered to patients and caregivers.

It’s our goal to be the best place online for people navigating hard health conditions, starting with the aggressive brain cancer, glioblastoma. The app has recently launched on iOS and the web at www.roon.com. On the app, you’ll find educational videos delivered by experts as well as answers to many questions that come up during the journey of glioblastoma. These short form videos from researchers, physicians, nurses, mental health professionals, patients, and caregivers deliver medically vetted information in a human way. We launched with glioblastoma, and dementia, Long Covid, and ALS are the conditions already underway to be released on the app soon.

Scan the QR code to check out the app–you can access many of the resources without even creating an account!

roon-flyer42 Download

Conclusion to #BTAM

As Brain Tumor Awareness Month draws to a close I have a super secret special announcement to share that you’ll just have to wait to hear more about! It’s coming up next week, so stay tuned to my social feeds and right here on the blog to get the update!

Follow my Link Tree to see all my social channels! Until next time, peace, love, brain. Adam out.
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.
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.