Author: Adam Hayden

I’m not Dead, and That’s Weird

January 27th, 2021

“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.

I’d rather leave a legacy of wisdom than war.
Four Months, Four Years, Four Lessons: Notes on Survivorship

May 26th, 2020
“My surgeons’ skills have added time to my life, more time with my wife, more time with my kids. Thank you to my entire medical team.”

Adam, October 13, 2016

I published my first blog post to this site in early October, 2016. That post came right around four months after hospital discharge (the “Four Months” in the title of this post). I checked into the surgery floor at IU Health Methodist Hospital with Whitney early in the morning, May 26, 2016. Four years ago, to this day, May 26, 2020 (“Four Years” in the title).

In my first personal blog post, I wrote the words you see quoted above. I include those words here to signal my continued gratitude for my team. These thanks are well placed, as our family recognizes this significant day in our calendar.

Today marks four years after my craniotomy and surgical removal of a seven centimeter primary brain tumor from my right parietal lobe, an area of the brain responsible for five major functions, including sensation, motor control, and spatial reasoning.

Today we met (virtually) with my neuro-oncologist to hear the results of my recent MRI scan completed Saturday (May 23, 2020). This is a scan we will not soon forget. Masked, we entered the hospital Emergency Department because the general radiology entrance is closed on the weekends. (Radiology shares a back hallway with the ED for trauma-related imaging.) The security checkpoint includes a metal detector that reminds us of the complex social conditions that surround the lives of some people cared for at the county hospital. We also wondered what further precautions would shape the encounter during a time of covid-19 related restrictions.

Whitney and Adam pre-MRI, May 23, 2020

Worth mentioning, also, after an area of slight concern appeared on our prior MRI in February, our oncologist recommended adding an imaging technique called perfusion to this recent scan. The perfusion technique lengthens the duration of the procedure by several minutes and includes placement of an IV and additional injection (beyond the routine contrast dye) to study blood flow.

Here we were, then: After four years, something like 25-30 scans, despite our typical anxiety (scanxiety) that accompanies each routine MRI, we faced new circumstances, if only slight disruptions: Whitney’s recent course of illness after testing covid positive, the masks we donned, the secure entrance, distancing from others in the registration line, the new imaging technique, the empty hospital absent of visitors, and the pervading concern that maybe we were catching new tumor growth in its nascency.
- Adam’s MRI thumbs-up, May 24, 2016
- Adam’s MRI thumbs-up, May 23, 2020
Our visit this morning revealed news of a positive outcome: The scan shows no new growth, and our doc chalked up the concerning area to late-effect radiation damage. We might relax our concern for the near-term, and we look to August for our next routine MRI.

I do not want to let this day pass without offering something constructive after 48 months living with a disease that kills many in half that time (“Four Lessons”). These are not definitive, action-guiding principles for life. They are simpler. They are variations on a theme that I shared during a talk at Stanford Medicine X in 2019, refined and updated for my presentation at the End Well Symposium at the end of last year, and shaped by the contours of my personal manuscript that hopefully finds its way to print over the next year. These are lessons from living, while dying.

Consider your quality of life today. When faced with a decision in the operating room to pursue aggressive surgery at the risk of left-sided paralysis or take a conservative approach that would protect my motor function but leave tumor remaining in the margins of the surgical area in my brain, my surgeon instructed that I, “Make a decision based on your quality of life today, not what you think it may be in the future.” This turns out to be good advice for living in general, not only in the operating room. Each of us has an uncertain future. It is good to plan for the future, mitigate against harms and obstacles, and yet all any of us have for sure is the present moment. Arrange your life so that it aligns with your desired quality of life today, not an imagined future.

Face fear with familiarity. Focusing on the present and allowing the future to unfold is frightening because it asks first that we allow the uncertain and unknown into our lives. I suggest that we face fear with familiarity. What information is available to us today? What is within our control today? What is the immediate source of our negative emotions and intrusive thoughts? Becoming familiar with those things we may attend to in the present helps us acknowledge our fears, not to escape or dismiss them, but to become familiar with the inner workings of our brains that are wired to alert us to danger, even when that threat isn’t right in front of us. Familiarity is the antidote to fear, and I am reticent even to express this sentiment because fear is not intrinsically bad. Allow yourself to fully experience that breadth of human emotion, but center yourself with the focus on what is present and at-hand.

Consider what to say to a cancer patient. When I instruct others to consider quality of life today and leave the future uncertain and unknown, I am flirting with everyone’s favorite thing to say to cancer patients, “I could get hit by a bus tomorrow.” This phrase and the war metaphors that are prevalent in disease rhetoric are two facets of the illness experience that I’ve objected to in blog posts, tweets, and op-eds. They are more than unhelpful; they are harmful. Taking the latter first, the problem with framing cancer as a fight or battle minimizes the potential for wholeness and wellbeing that are available when an illness is embraced into our life narratives. A war leaves casualties, winners, and losers. Surviving is not a victory and death is not a failure to fight. Instead, maturity and growth through illness are possible, whether treatment leaves us with no evidence of disease or end-stage progression. Wars and battles leave little room for growth and acceptance, what scholars call existential maturity.

This advice specifically, and the next, are sensitive to the context of the patient and their preferences. I know many patients who frame their own experience as a fight, and that is their metaphor to claim. For me, in my most insightful moments, I’ve felt more the sage than the soldier. Illness leaves us with wisdom, not war.

Rethinking thoughts and prayers. This is a tricky one. We each are licensed to our beliefs, and all of us should extend as much charitable interpretation as possible to the words that others speak to us. I remind myself often that others express their very best intentions, and those intentions supersede the literal words they use. Though I’ll say this, it is very common for folks to cope with another’s serious illness by fitting that person’s illness into a Divine plan. I cannot get on board with this. It does not fit my conception of The Divine to imagine that I was singled out, given a potentially life-limiting disease, and by those circumstances, forced our kids to face the loss of a parent, so that God could teach a lesson through my experience. For God, whatever God is, surely there is a better way to teach lessons than clamp me to a table and open my skull. When encouraging someone facing illness, center your religious beliefs in what brings you comfort as the friend and observer, but be careful not to thrust your beliefs onto the person experiencing the illness. I recognize that your show of support for me is expressed through your carefully considered prayer and meditation for my healing, but healing may not be a cure. The healing may be my acceptance that no cure is available.

As you move forward, navigating these uncertain times of public health crisis, you may consider these lessons that I’ve practiced these four years: Align your decisions to your desired quality of life today. Live presently and familiarize yourself with those things that you fear. Consider healing, wellbeing, wholeness, and personal growth that may come through experiencing illness. And extend charity to others while respecting their beliefs.
To handle distress: Do as much You as possible

March 23rd, 2020

“Today you are You, that is truer than true. There is no one alive who is Youer than You.” ― Dr. Seuss

I’ve read many great articles about homeschooling, setting up the optimal space for working from home, and activities to engage kids during long stretches indoors. Online fitness classes are easy to find. Bands are streaming sets online, and Netflix rolled out the very cool movie night watch party feature to connect with friends virtually. Many employers are scheduling recurring “coffee meetings” to bring their remote employees together. Universities have shifted in-person instruction to online lectures.

These are all incredible changes that happened within a matter of days! We should be encouraged by these moves to act in a unified way to protect the health of our communities. Still, we have plenty of work to do to reinforce adherence to CDC guidelines, and it would serve each of us well to heed the advice of epidemiologists and healthcare workers–like my wife–who are sharing their experiences from the frontlines.

This post is not to reiterate those cautionary tales, and I do not want to repeat the terrific resources that so many have made available.

Instead, I write this post to address one fundamental question: How do we feel normal, when so much around us is changing?

Over three months, beginning in May 2016, Whitney and I reacted to the news that I was diagnosed with the aggressive brain cancer, glioblastoma. With this diagnosis we were confronted with my mortality: the dismal five-year survival rate for GBM is less than 10%. Yet this existential threat to my survival, Whitney’s husband, the dad to our kids, was only the tip of the iceberg. Just beneath the rolling waves of serious illness was a greater threat: the complete disruption and reorientation of our lives.

In short order, I stepped away from my full-time career working in learning and organizational change management, Whitney stepped away from her full-time position at the hospital to care for me and our boys, and she shifted to a variable schedule, with enough hours to maintain benefits eligibility, requiring that she commit to working every weekend; we sold my car because my persistent seizures made driving a risk to myself and others, and we sold our condo both because the second-floor walk-up was incompatible with my limited mobility following surgery and the mortgage seemed impossible to maintain after losing my salary.

By Fall 2016 our lives were barely recognizable to what they had been only months before.

I share this because the disruption and the reorientation of daily life may feel a lot like what you’re facing now in response to social distancing and other mitigation or suppression efforts to slow the spread of the novel corona virus or covid-19.

I want to offer the advice that I give to newly diagnosed patients and their loved ones who reach out to me through this blog or through Twitter.

I am frequently asked this question by newly diagnosed folks who must reorient their lives in light of serious illness–usually for those reaching out to me, the diagnosis is brain cancer, but I think the advice generalizes.

Imagine that you walk into an office visit with an oncologist, and you walk out with the information that your life expectancy is now measured by reference to “median overall survival.”

This is not unlike the news all of us are reading today, in light of covid-19. Our communities, the number of presumptive cases, the exponential logarithms that predict “points of no return” to exceed hospital capacity, and the predicted mortality rates, both mortality for covid-19 but also mortality rates for other life-threatening events like heart attack that are increased because hospitals reach capacity and clinicians and beds are unavailable, this news is a difference in degree, not a difference in kind, from the one-on-one giving of diagnosis between a doctor and those within their care.

“Adam,” I am asked by folks facing cancer, “What now?”

In simple terms, this is my response: Get back to doing something that feels like “you,” just as quickly as you can!

In the hospital after brain surgery, and then in an inpatient rehabilitation hospital where I re-learned to walk, bathe, feed, and dress myself, very little of my life looked like the guy who dribbled a soccer ball outside with the kids or littered the countertop with books and journal articles to write papers for grad school.

I was on a locked brain trauma unit. I was using a wheelchair. My family could only visit on limited hours. Even the clothes that I was used to wearing didn’t fit because my body had swelled because of high-dose steroids to control brain swelling.

But I could read, and I could write, and I could continue working out the details of the philosophy of science literature I had studied in grad school.

Clearly this is a niche market! What feels like you may look nothing like this! But what’s important is that feeling like my life was totally disrupted, I could reclaim some of the activities that felt normal; that felt like me.

Adam journaling days after brain surgery, late-May 2016

So as you scroll past the alarmist articles, please for your health and the health of our communities, be informed and take action! But if you’re feeling overwhelmed and distressed; if you’re feeling like nothing is normal. If you stare at yourself in the mirror and wonder, “What now?”

Try doing as much you as possible, and you may find that when the world is disrupted and you must reorient your life, you can trust that your values, goals, and purpose will carry you through.
My wife, on the front lines

March 20th, 2020

Breathless.

What time is it? It feels early.

Are my contacts in? My left eyelid feels gummy.

I reach for my phone.

Thud.

It knocks the side of the wooden bed frame.

Hot breath. Humid. Which child is pressed against my back?

I reach and grasp for the wire of the ear buds and grip the thin rubber between my index finger and thumb, and I slowly pull the phone toward my body; deliberately; careful not to pull the ear buds from the plug on the phone.

5:22am.

I scroll notifications with my thumb and nudge the sleeping child toward the center of the bed. Eyes close, and I wake to hear her alarm sound. The gurgle of the coffee maker comes next. I slide from beneath the covers and tug the pillow to replace the form of my body beside the sleeping child.

I creep quietly to the kitchen, toward coffee and morning email.

Her silhouette shifts the shadows from the hallway until her navy scrubs come into view. I smell the daily lotion that lets me know she’s close. Her hair is damp.

The metal tumbler rings as I bring her clean Yeti from the dish dry rack onto the cheap laminate countertop. I step to lean my slinking basketball shorts and thin butt against the sink and hunch over my phone with a warm glow illuminating my face. The warm mug radiating in the opposite palm.

Her lunch is packed with whatever leftovers we cobbled together from the previous day.

“We need to be more careful about wasting food, guys,” she scolded the boys the night before, “We’re entering a time when we may not be able to get as much fresh food.”

Her slip on sneakers for the commute to and from are kicked aside on the doormat inside the garage. They are not permitted to enter the house.

She leans in to kiss. Embarrassed by my morning breath, I nod my head low, and she kisses my forehead.

“Good luck today.”

She nods.

Then it’s later.

10:13am.

My phone dings from the charger. The younger two kids are running through the house, throwing pillows, and dragging blankets from each bed to a pile in the living room.

Another ding.

The text is from my wife, on the front lines.

I can’t wait for her to come home.
2020 Tumor Takedown Tailgate

March 1st, 2020

It’s that time of year!! The Third Annual #TumorTakedownTailgate to benefit National Brain Tumor Society!

Join us Sunday, April 19, 2020, 3pm-6pm at restaurant Revery in Historic Old Town Greenwood, Indiana to tailgate to benefit brain tumor research!

Get your “early brain” tickets beginning today, March 1st, 2020, for only $40! This general admission ticket gets you into the event with emcee Lauren Casey from RTV6, plenty of local beer including our premier vendor Mashcraft, food provided by Chef Mark Henrichs and the Revery team, participation in our silent auction with packages from Hope Plumbing, Indy CD & Vinyl, and more, and local music.

Tickets increase to $45 beginning April 1st, so get on board early!

Early brain tickets are available here.

We also have a new way to give this year! Starting today we’ve launched a two week, limited run fundraiser with Custom Ink for #TumorTakedownTailgate trucker hats. These trucker hats from recognized classics brand Yupoong are only $25 with proceeds benefitting National Brain Tumor Society. Act quickly because the fundraiser closes on March 14!! Buy before it closes, and you can rock the TTT trucker at this year’s event or wherever you go to let people know you are raising money to cure one of the most deadly cancers.

By the hats here before March 14!

In our first two years we’ve raised nearly $40,000 for National Brain Tumor Society’s Defeat GBM initiative, now in its third year of a five year commitment to put $10M toward research for glioblastoma. This research extends and enhances the lives or GBM patients like Adam, our tailgate event co-founder.

Thank you to our generous gold and silver sponsors!! The BlakeStrong Bowell Fund, the Luminous Fund, Bookends Financial Planning, Hope Plumbing, and Stadium Goods.

See you at the Tailgate!

Logo designed and created by Gabe Granger. All photos by Adam Ramsey.