Existentialism

Four Months, Four Years, Four Lessons: Notes on Survivorship

“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.

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.

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.

Living with Cancer: Insidious and Destabilizing

“Don’t think, daddy! You can’t think right! You have a brain boo boo. Just ask me next time.”

Isaac, our confident, insightful seven year old, the oldest of our three boys, said these words to me this morning, when I shoved his lunch box into his backpack while rushing out the door to catch his school bus. The prompt for his cutting remarks was my explanation of the contents I packed for his daily lunch. “I thought you liked that stuff!” I muttered dishearteningly, with a mixture of confusion and exasperation.

Isaac, seven years old, before school, January 2019

My crime: thinking, or rather, as we may say as adults, assuming, and on that charge, I am surely guilty. I assumed a handful of snacks, protein, a juice box, and a square of chocolate would be a fine lunch for our oldest guy who is limited in his food options, after Whitney and I discovered, with the help a functional medicine practitioner and blood, urine, and saliva testing, that Isaac suffers from several food allergies.

I’ve raised before the issue of talking to kids about cancer, but what we face, the daily grind of parenting three young boys, my spouse who must work outside the home to serve as our primary earner and carry our medical benefits, and the primary at-home guardian, me, suffering from brain cancer and the host of accompanying neurological disorders–namely, headaches, seizures, and motor impairment–is a combination of factors that affects our kids in untold ways. It affects me, too, in a deeply fracturing sense. A fracturing of my will from my ability; my plans for the future and my practical responsibilities.

Surely we all squabble with our kids, and for this reason, motivated by a desire to connect, or to comfort by striking chords of relatability, or for fear of peering too closely at a situation that is all too frighteningly real, friends say to me, “yeah we get lip from our kids, too,” or “we also have a picky eater.” But the burgeoning independence and personality of an oldest child, or picky eating habits or allergies, and even the stressors of an at-home guardian fail to address the insidiousness of serious illness.

“You can’t think right! You have a brain boo boo.”

The 17th c. philosopher Thomas Hobbes, in his important work, The Leviathan, envisions conditions for people absent of government oversight: a “state of nature,” he called it. Important to note is that Hobbes is writing in a time when Europe is ravaged by a bloody civil war and political crisis. At any rate, Hobbes considers life to be “solitary, poor, nasty, brutish, and short,” in this state: “a war of all, against all.” Hobbes did not consider this a historically accurate description of pre-political humanity; rather a thought experiment to motivate his political theory.

During my first semester as a philosophy undergraduate we read excerpts from Leviathan. My professor pointed out the “insidiousness” of the imagined “natural state.” The point, my professor emphasized, is not that everyone is locked in combat. Instead, the threat of instability looms large, and this unsettling psychological state is a hinderance on people’s desire to live well.

Living with cancer is insidious and destabilizing. A psychologically unsettling state. After active treatment has ended, at least for brain malignancies like glioblastoma, patients enter a period of disease monitoring: MRI (brain) “scans” every eight to twelve weeks. The return (recurrence; regrowth) of glioblastoma is near certain, regardless of surgical success or response to chemotherapy. After recurrence the disease is near universally fatal, and the five-year survival rate is a dismal 5.5%.

My working life, that is, “work” in all forms, including: my paid part-time work, and also writing (blog posts like this that you are now reading), speaking, interviewing, advocating, and so on, is taking its toll on me both physically and emotionally. My days end in fatigue, and continuing to tell my story, though with innumerable positive implications for myself and others, is also like retuning to the scene of the crime. I am surely threatened by this destabilizing psychological state. Do I continue to work? Do I retire to a life focused on family and permit myself to let go of self-governed responsibilities, or, like Hobbes, are these self-governing practices the only things separating me from a natural state?

Following my son’s ill-delivered but insightful advice: it would be better not for me to assume, but to ask all of those closest to me and to myself, how might I best seek a life well-lived?

Our Cells; Our Bodies

Introduction: Biology, Bodies, and Minds

I framed Glioblastology with an insight from the 20th century French existentialist Maurice Mearleau-Ponty, grounding our mental and emotional states in our bodies and biology. The identification of our “self” with our bodies shapes the framework through which I share content with you. It is our bodies, broken and dependent on others, which we must acknowledge are central to patient-centered healthcare, placing the person first, before the doctor, before the treatment, before the diagnosis. Our diagnoses do not define us nor supersede us, as persons; yet, neither do they exist independently from what makes each of us unique. We only are our bodies; our conditions and states, symptoms, and feelings are biological phenomena perceived through our experiences.

This is my take, anyway, from an amateur existentialist. My interpretation of the existential framework asserts centrally that a ‘self’ exists in the experiences emerging from our biological foundation. Primary to the existentialist program is the claim that the emergent ‘self’ is not distinct from the body: “I am my body.”

We may also be informed by the Cartesian model of duality. That is, two things exist from which the ‘self’ is derived: there is a body and there is a thinking thing. I played with the famous claim, ‘I think therefore I am,’ suggesting that to cease thinking is to cease being. It’s my intuition that pre-reflectively, many of us understand ourselves by this Cartesian, dualist framework. I suspect a good number of folks have something like the following in mind. There is a body that ‘I’ have, and there is a pilot (‘I’ or ‘me’) at the helm, in the center of our thoughts, charting the course through our lives.

These are competing views. On the one hand, the existentialist claims that there are biological processes that are responsible for our felt experiences that we naturally refer to as the ‘self,’ and say, ‘I experience,’ and ‘I feel.’ Yet this talk of I, me, and self is strictly talk of our bodies and biological processes. On the other hand, the dualist suggests that biology carries on concurrently with our thinking and decision-making, in virtue of the free choice of our will, exercised by our pilot-minds. On this latter view, bodies and minds are connected in important ways, yet distinct. There is a body we have, and there is this mind that we have.

The question we are invited to consider is whether we are our bodies, only, our bodies and minds, working in concert, or only our minds, churning thoughts. Whether we can answer this question, at all, is the stuff of philosophy, psychology, cognitive science, and molecular biology. A more poignant question to consider today is what bearing our attitudes towards this question has on our suffering and illness; treatment and recovery.

Our Notion of Patient Empowerment Evolves Yet Again

My attitude is that patient empowerment calls to action both medical teams and patients to find common ground in asking why? Why is this the accepted origin theory of the disease expressed by my diagnosis or pathology? Why is this treatment regimen prescribed for this diagnosis? This attitude suggests that we must treat the person, the ‘self,’ to effectively treat the body. That the road to treatment and recovery is paved with patient empowerment, facilitated through the open exchange of knowledge. This is captured in my opening remarks that we, as persons, are not distinct from diagnoses, and neither are we superseded by them. Our individual conditions make us unique, but our common bodies that we should be affected by having diagnoses with biological underpinnings, unites us all as persons, and our intellectual acknowledgement of this fact relies for its comprehension on the very same biology that makes this important claim possible.

Hence, our understanding of patient empowerment evolves yet again to include the notion that biologically we are connected with each other through a rich tapestry that includes more than one billion years of cellular adaptation. One goal for the post you are reading is that we find an insight illuminated when we view our ‘selves’ as minds, bodies, and biology. That we think, we move in space, and our cells are primarily involved in enabling our mental and physical lives. This realization is so vitally important because we understand our diagnoses–especially cancer, as something gone terribly wrong with our bodies, our cells, our genes, our DNA, but our bodies just are our cells, and our minds emerge from these bodies, from these cells. Liberating our mental and emotional lives from an attitude of self-deprecation that blames our bodies for our illnesses is an early and important step toward treatment and recovery.

Patient empowerment relies on an open exchange of knowledge with medical teams, an answer to the question why am I prescribed this treatment regimen, and a forgiveness of the ‘self.’

My neuro oncologist and I discuss treatment; November, 2016.

Cells and Bodies: Important for What’s to Come

The trajectory I have followed through these early weeks of documenting my own brain cancer battle has taken us through a technical discussion, describing glioblastoma multiforme (GBM). I introduced patient-centered healthcare by way of an anecdote. Today I offer insight into the relationship between our minds, bodies, and biological foundation. In the coming series of posts I intend to explore this biological foundation through the discussion of topics related to molecular biology. Specifically, I hope to say more about my own journey with Optune, the tumor treating fields (TTF) technology. I also plan to introduce the metabolic theory of cancer as a foil to the presently accepted genetic (or somatic) theory of cancer. These discussions are helpful as a platform to share my narrative as it relates to choosing a plan of care, it creates an opportunity for you to learn more about the frontiers of cancer research and therapy, and it enables me to sharpen my science communication, a skill set I seek to expand, as I hope to offer continuous improvement with the quality of my blog posting and look for opportunities to speak as a patient advocate on panels or events.

I’m looking forward to it!

Cheers- AH