Philosophy

Grieving the Life that Is Not; Accepting What Could Be

In this post I examine my deep sadness, and I find it grounded in the notion that I grieve the life that is not: not the life that I live now, but the life that could have been, if I pursued another path, but did not, and so I grieve the loss of that life that is not; not what is, but what could be. Grieving has manifested with great sadness, but by the end of this post I find my way toward new possibilities grounded in acceptance.

On its face, one would think grieving a devastating medical diagnosis (c71.3) would manifest sadness involving the future loss of one’s life that he is accustomed to living and the attendant worries about his spouse, their children, family, friends, relatives, coworkers, and so on. We fear our deaths, and we fear how others will fare after our passing, and so it is reasonable to guess that we grieve the loss of our actual lives, as they exist today. This is grieving the life that is.

Surprisingly, I grieve the loss of my life as it could be, what I have called, the life that is not. I grieve the many possible lives that could be mine, or could have been, but now fold under the faculty of imagination. I stand only to lose the life that I lead today. Most generously, the life I could live in five or six years time, which significantly limits the range of possibilities that once were.

I acknowledge this grief is self-centered, and I offer little defense of this perspective other than to gesture toward the careful end of life planning and estate documents I have prepared with my wife, the commitment I have made to my children to seek happy moments for memory-building each day–difficult as those moments are to find some days, and to remind myself and others that my motivation toward writing, speaking, and meeting with researchers, clinicians, and those in training, is to leverage my experience in service of benefitting other patients who face their own grieving for the loss of what could be, but is not.

Quantum mechanics describes a wave function. The wave function describes probable positions of theoretical constituents of a quantum system where the exact position of entities cannot be determined, or predicted, without taking a measurement. This is a very sloppy summary, but it is helpful. Stay with me.

In more plain language, by way of example, here is a picture of physics pre-quantum revolution. We could take the initial conditions of a baseball duel between pitcher and batter, accounting for pitch speed, bat speed, ball spin, pitch trajectory, initial moment of impact, and so on, using classical mechanics, a physicist may derive an accurate prediction of exit velocity, trajectory, and distance travelled of the ball leaving the bat. The physicist could say, “here is where the ball will land,” and we could find the ball actually landed in just that spot.

Classical mechanics, though fraught with some intractable problems, is elegant because the theory space between what is predicted and what is actual, is narrow. Given a complete set of initial conditions, classical mechanics could predict the past and future universe. All of it. The first grand system to unify earthly and cosmic phenomena. Think of the scope, power, and satisfaction of theoreticians working in this domain! Little in a classical system is left to uncertainty. The world is determined.

In the quantum system, we no longer have bats and balls. There are instead theoretical entities such as electrons, which are very little like a ball as we conceive of the term, but are “smudges” in spacetime that can never be fully accounted for. The physicist instead accounts for the electron’s position by way of a wave function, a mathematical prediction of the many possible locations of an electron. A measurement can be taken to more accurately define the position of the electron; once the measurement is taken, the wave function, the description of possible locations, ‘collapses.’ The quantum system is uncertain, its theoretical picture of the world is unverifiable, if we take verification to be something we “see” with our eyes, and not merely detection by computerized instruments. Einstein famously resisted adoption of the quantum world finding it to be too indeterminate.

My life no longer resides in the determinate world of classical mechanics. I am an uncertain entity defined by statistical possibilities.

I grieve the approaching collapse of my wave function.

I accompany Whitney to work each Wednesday. She treats patients admitted to the hospital. I sit outside of the Starbucks, drinking coffee, reading, and writing. This is my favorite activity because it places me in the presence of surgeons, oncologists, internal medicine physicians, radiologists, nurses, therapists, and medical students.

I eavesdrop on conversations about rounds and residents. I discern what the med students are studying by listening closely to their peer-to-peer flash card quizzes. I listen for terminology that I may be able to define.

On pains of extending a metaphor beyond its usefulness, I imagine a possible world where I became a surgeon to resect my tumor, not the patient. That wave function has collapsed on my present location, outside of the Starbucks, jeans and flannel shirt, not in scrubs and gowns, stethoscope tasseled around my neck, leading the cadre of residents into the operating room.

Naturally people often ask me how I am doing. “I am doing well,” I say, “I am rebounding from my last chemo round, and my energy is coming back.” Of course this is a superficial response to a superficial question, but it is how we get along in the world, interacting with others, prioritizing politeness over candor for the sake of cooperative living, and insofar as I tend toward politeness, I have few complaints with these social norms.

Though should I be candid.

I am very, very sad.

I am not sad for losing my actual life–the life that is. My wife is strong, my kids are emotionally mature, our extended families are active in our lives, our communities of support share our values, our life insurance policies, college funds, and savings accounts will not support my family indefinitely, but all will be well beyond my passing. There is sadness here, but there is also my supreme confidence that Whitney, with an army of support behind her, will see our kids through, toward successful lives, relationships, and children of their own.

When I reflect on my deep sadness, I find this feeling grounded in the loss of the life that could have been, but is not. The range of possibilities narrow more each day. I stick my nose into medical journals and pre-med text books in a naive and misguided pursuit of theories and terminology that at some future time I apply to a school of medicine. I yearn for a career in medicine. We have terrific accounts of physicians turned patient, why not patient turned physician, I wonder. To dwell more on this failing and naive hope for the future is to further exaggerate the life that is not, proportional, if not causally connected, to my deep sadness. The determinate and certain classical world is now overthrown by the uncertain predictions of statistical probabilities.

Friends, as I take myself to be in the presence of narrowing possibilities, sitting outside of the hospital Starbucks, know that I am pressing myself to learn more, to work harder, to meet more clinicians, to schedule more speaking events. Grieving is a process toward acceptance, and acceptance of a current state is a measurement taken. With new data in hand, perhaps it is time to revise my initial conditions and be open to a refreshed range of possibilities that exist in this new reality of not what is, but instead, what could be.

Self-Depracating Journey Through My Higher Education Past and Uncertain Future

In this post I begin with more confession than narrative when I juxtapose my innate intelligence with my poor study habits. My intellect is wasted when my scholastic will fails to promote my best interests. I then lament the loss of potential that I imagined for myself with a future career in higher education. I conclude by recapturing at least some of that potential, struggling to make sense of where to find my place and values amidst chronic illness. Could I contribute to science or health communication?

A favorite instructor of mine during undergrad said (and I am paraphrasing here) that the aim of a philosophy education is to make good philosophers, not good students. On one reading, the suggestion is student duties are subservient to quality philosophy. On another reading, probably the correct interpretation, it is presupposed that budding philosophers are already equipped with fundamental scholastic skills before pulling up a chair to the philosopher’s table, but for me, in that moment, the interpretation was not important. The prima facie reading was good enough: good philosophy trumps poor study habits. This was something I desired to hear, and so the philosophical truism remains appropriate: there is no value-free observation.

Here are two further claims, the first often spoken to me, the second often said of myself, each standing juxtaposed in a binary characterization of those features describing Adam as a student, a scholar, and (though I resist common use of the term) a thought-leader. The accurate statement is likely somewhere in the middle of this dichotomy, but for effect, let’s continue.

(1) Adam is the smartest person I know.

(2) Adam fucked up some of his education.

Let’s take each in turn. On the one hand, I excel at my endeavors when I manage to see them through. I continue to meet monthly with a group of four philosophers. These are past professors who shaped my life and academic career: a director of graduate studies and accomplished metaphysician, a current chair of philosophy and well-published philosopher of science, a leading Kant scholar, who, as the story was told to me, is someone who took the MCAT exam more-or-less only to accomplish the task, and not only was the task accomplished, the job done, but he performed strongly, and finally, an emeritus professor of philosophy who chaired a department for 30 years, publishing in the field of ethics. My professor who offered the quote discussed in the previous paragraph is one member of our five-person group. Our first unofficial official gathering of this band of philosophical brothers [1] occurred while I was inpatient at an acute rehab facility, confined to a wheelchair, living in room 202 of the locked brain injury unit. Here we are, interested in Einstein, my focus at that time, while the nurses and doctors round, take vitals, administer meds, and so on. Each of these friends display excellence in their fields, and I am driven to be better, to work harder, and consider more deeply after our coffee talks (“I’m verklempt.”) During our last discussion, one topic–and these topis always arise from the ether, interesting to one of us, at that moment, and then pursued by all while coffee cools and the dregs come into view: “is aging a disease.”

I recently read an NIH paper that correlates glucose metabolism and increased symptoms of agedness. The author compared diabetes and aging. Maybe I will bring up this paper next time we meet. We never managed to settle on an adequate answer, but it was discussed that our question hinged on to further objects of conceptual analysis: just what is ‘disease,’ and what is ‘treatment’ as the concepts are importantly related.

After my diagnosis some months ago, I began a journey to become a patient expert of my disease, and I am proud of my knowledge gained in only a short period. I have zero clinical knowledge, I have no idea how to diagnose a patient, I could not draw a vile of blood, place an IV, much less shunt, stent, or suture. I do not know the molecular markers of non-small cell carcinoma. I could not make sense of the morphology of a slice of tissue taken from a brain tumor. Though, if I were to slip in the back door of a neuro-oncology conference, I could make it through the morning sessions before my identity is embarrassingly revealed at lunch.

I have always been a natural public speaker, and this is not to suggest that I could stand up and speak on anything, at anytime. I certainly must put in the effort, do the work, to learn the topic, to weave together the network of vital information. Though, I am quite good at digesting a few papers and quickly drawing out the key information, synthesizing that information, and presenting that information in way that is digestible for large audiences.

Let these be my pieces of evidence in support of the first claim.

On the other hand, in support of the second claim, I mention it took me longer than it should have to finish my undergrad. During grad school I often submitted excellent work, several days past the deadline. I still have a grade of Incomplete in one of my grad school classes (Note: this professor to whom I still owe a paper is also a member of the philosophers coffee group). I took the GRE and achieved at best a mediocre score. I only applied to one PhD program–relocation being out of the question for my young family. My options were limited, and I applied to the only program that made geographic sense while still recognized in the speciality area I intended to study. PhD acceptance rates in philosophy programs are more competitive than acceptance to Harvard Law School (fact check; not fake news). PhD acceptance for the program to which I applied looks something like this: 330 annual applicants, usually 5-7 candidates accepted. I was waitlisted. This means I was not accepted. I was on the bubble. I wasn’t thrown out at first glance by the admissions committee, but neither was I considered a must have. On balance, applying to only one program and being waitlisted at that one program is viewed somewhat as a success so far as the competitvive nature of PhD program admissions are concerned. Often applicants apply to a dozen or more programs with the hopes of gaining acceptance to one. Though for me, I intended to earn a PhD, and decisions less than acceptance I viewed as a rather unsuccessful outing. My professor, again, to the rescue, confided that maybe I could accomplish more as an “independent scholar” than I would manage to achieve during the seven year slog to earn a PhD. At any rate, I intended to sit out a year before applying again, securing an adjunct faculty position at a community college to scratch the academic itch. Later, the private sector came calling. Then, *ahem* brain cancer. Here I am, lost, a rather lackluster academic career behind me, all the connections, conference attendance, and research of a graduate or PhD candidate, and the technical skills and foundational knowledge to excel in a strong program. Yet, I haven’t proved able to commit to the grind of earning my spot.

Here I sit in the gray area between claims (1) and (2). Stories like, ‘Einstein couldn’t get a job,’ or ‘Einstein’s kindergarten teacher said he couldn’t read,’ or ‘Einstein was a janitor at a university and solved math problems on the board and then he and Matt Damon watched Patch Adams and solved for the speed of light in a vector space’ do little to raise my spirits. The reality is I have done little to help myself out, and before cancer would dash my hopes for a long, rewording career in academia, I did it to myself.

How is that for painful acknowledgment and confession?

I have been holding out hope for some time that after navigating cancer treatment, maybe after getting a year or 18 months of stable MRI scans under my belt–hell, I’m eight months stable now, I would rally around my academic potential, retake the GRE, dust off my writing sample, and once again apply and gain admission to a PhD program. I reflected recently that the liberal arts, and a graduate education in the liberal arts, teaches one how to effectively learn. This facilitates plug and play content to learn at will. Naive, maybe, or arrogant, but, see claim (1). I have been neck deep in molecular biology and biochem textbooks, I am able to summarize the two rival theories of carcinogenesis (SMT and TOFT), I am able to speak to the Metabolic Theory of cancer, and I have an opinion on reductionism vs holism in constructing useful biological explanatory narratives. Maybe my return to academia would be a triumphant dissertation motivating deeper exploration of a robust philosophy of the life sciences.

Today I accompanied Whitney to Eskenazi Hospital, her employer, and home to my future primary care provider. We are strategic in this selection, choosing a hospitalist who is usually rounding on the inpatient floors and only holds clinic a day or two each week. We figure we can get in with him on clinic days, and when my disease progresses to require hospitalization, Dr. will already be familiar with my case.

Excited to be in a hospital and not on a gurney, I looked forward to meeting a new doctor today. I have come to regret not pursuing medicine in school. Regardless, here we are navigating a beautiful hospital campus, and I am overcome with the familiar light headedness of overstimulation. The activity, flourescent lights, shiny floors, and automatic doors, I begin to put more weight through my cane to steady myself. My pace slows. My eyes shift downward to limit focus. I fear an impending seizure, or fainting episode. Anxiety or neuro-chemical imbalance? Is it the nerves? Is it the meds? Is it the brain cancer?

How will I navigate a similar environment daily in university halls.

Sunday, March 5, we will see when I address 150 or more gathered to hear me present my journey with brain cancer. Will my ingelligence carry the day? Have I limped my way through school adequately to earn my role as part storyteller part instructor?
What potential fuels the next chapter?

Notes:

[1] Philosophy has long struggled with the demographic composition of its students and faculty: typically all male, white, middle income background. Few women. Few persons of color. Few persons with disabilities. The discipline recently has been rocked with charges of sexual harassment, and the very real problems of systemic discrimination, problems within the realm of academic philosophy to address, have failed to sway the discipline in a meaningful way toward public action. Philosophy is my love, and it is my passion to defend, but the discipline has faced an ongoing intervention from within and outside the field for some years. I wish not say more here, but the representation of my group of close friends and philosophy faculty being all white middle aged men is problematic, but they are also men I respect dearly who have impacted my life in immeasurably positive ways, and I ask at least for your suspension of judgment, if only through the duration of this post.

2016 Statement on Cancer

Two years ago, December 26, 2014, I had a seizure (undiagnosed).

This year, December 25, 2016, I had a seizure.

I have brain cancer, and like many, mine presents with frequent seizures. It took 18 months of “it’s probably stress related,” and “it could be vertigo” to get an MRI ordered (May, 2016) to investigate my dizziness and left-sided weakness and reveal a primary brain tumor. Since, I underwent (awake) brain surgery, inpatient recovery, inpatient rehab, chemo, radiation, and now monthly chemo cycles. I continue to struggle with seizures as part of my cancer. I vowed not to be the cancer mascot; not to fill your feeds and timelines with Adam and his cancer story. “I’m more than my disease,” I quipped.

New strategy: fuck that.

I am the cancer mascot on behalf of an estimated 12,000 newly diagnosed glioblastoma patients this year; 10,000 of those folks won’t live much past a year. I’m 7 months out from formal diagnosis. In these 7 months after surgery, I taught my left leg to walk again, my left arm to type again, I’ve learned cell anatomy, cellular metabolism, intro to genomics, and read extensively on competing theories of carcinogenesis. I am reading medical textbooks on biochem and molecular biology. I am graduate trained in the philosophy of science. I am strong; smart; driven. I am learning my disease.

If you think I cannot learn the biological features of my cancer..

If you think I cannot advocate to medical professionals on behalf of brain cancer patients…

If you think I cannot raise money and awareness for brain cancer research…

If you think I cannot contribute meaningful academic work with respect to the explanatory framework and ontology of cancer to benefit the medical oncology research community…

If you think I cannot expose at least one vulnerability of my aggressive cancer, with positive impact to clinical outcomes…

Prepare to have your beliefs revised.

2017 is my year.

Stay tuned.

Learning Lessons this Holiday with Cancer

Defcon: Seizure

Light-headedness, bordering on dizziness, headaches, worsened by fluorescent lights, anxiety, and uneasiness, especially in large crowds, weakness through my left leg, a three-pound battery backpack and electrodes taped to my head. It is time for our preschooler’s (the older two boys) Holiday Program. I am a six-foot-two, awkwardly gaited, cane-hobbling attention grabber as I shuffle through the chaos of hundreds of young families to find seats and keep a hand (or at best an eye) on our youngest. Grandparents are there to help us, and there is an unspoken young family code that if an 18-month old is running by, drooling and smiling, you are licensed to scoop up and restrain this child-on-the-loose until a parent or guardian arrives to relieve you.

Left to Right: Isaac, Noah, Gideon; Holidays, 2016

Whitney and I volunteer at our kids’ school regularly: field trips and “special days” celebrated around birthdays, distributed across our two boys we have enrolled, and the three years we have had at least one child attending, we’ve volunteered at Crabapple Creek often. Lately these events have totally drained me. The fatigue and other physical challenges put me in defcon five for seizure risk. My body has taken to rather sudden, mild seizures when I place too much stress on it. Like an overheating engine, after a long day, a stressful event, or over stimulation from bright lights, patterned and textured floors, or colorful walls, my brain short-circuits. I experience the familiar twitchy, dizzy, motor function loss characteristic of seizures. I usually feel it coming a few seconds before seizure strikes, and I must sit down. Immediately.

A War of All Against All

Thomas Hobbes wrote about the state of nature, a competitive, every person for herself, war of all against all. I have read Hobbes a handful of times, as I suspect many with at least a BA in Philosophy have done. My closest reading of the Leviathan, where Hobbes articulates his theory, happened in a History of Philosophy course, Society and State in the Modern World, or something like this, a seminar-style discussion course.

Hobbes imagined a violent natural state, red in tooth and claw. Each person has a natural right to survival, and in the face of limited resources, our competitive drive and natural rights lead to a life that is “solitary, poor, nasty, brutish and short.” Hobbes proposed our only path toward peace is to acknowledge that our right to survival is better protected by cooperation, and so we contract together and appoint a government to enforce our pact. This is one theory of social contract: Rousseau articulates an alternative view, but that will have to wait for another time.

My lesson from that seminar, and a close reading of Hobbes, is this: the really frightening thing about the natural state is not the literal violence of a war against all, but it is the insidious, psychological threat of the potential for war, losing one’s natural right to survival. The war is psychological; fear-driven.

Navigating big events, especially those with young families, hundreds of quickly moving children, and overstimulation of being in the center of these things, reminds me of this Hobbesian view because I feel the strain of this psychological war. I am fearful of seizure. Where could I sit? How could I avoid a scene? What if I lose consciousness? How close am I to Whitney, who will know what to do?

I am consumed by my fear, and I fail to engage meaningfully in the event.

Hobbes instructs us to, whenever possible, pursue peace. Create a contract for cooperation. I apply these lessons to my own psychological war, defcon: seizure. I seek the cooperation of spouse, friends, family, and remind myself to be honest, to trust others, to acknowledge my right to self-preservation is better protected by setting my individual rights aside and contracting with those in my community. Hobbes imagines this will be a challenge because we are competitive by nature. For those of you who have had to rely on others, given medical, financial, or other personal hardship, recognize the difficulty in sacrificing your own rights, but also notice the value in cooperative living. It is difficult to admit you need help. But to be fully present, we must give up our selfish, first-person view, and rely on others.

Dealing with Ambiguity

The Holiday Program includes a dramatization of the nativity. Our Middle child was the “blue king,” signaled by his blue construction paper crown. Our oldest was Mary’s donkey. Before the nativity the kids show off their “circle time,” a daily school activity. Each child is assigned a different “job” (“Continents,” “Solar System” “Weather Watcher” “Line Leader,” etc.) to perform and learn by doing. In the comfort of the classroom the children happily perform their “jobs” without much goading from the teacher, but under the proud gazes of grandparents, flashing camera bulbs, and strange surroundings of a new environment, the children are less cooperative. I am impressed by how well the teacher and aid handle the kids’ uncertainty and anxiety.

Noah, the Blue King; Holiday Program, 2016

I once held a position, Senior Training Specialist, and one of the responsibilities included coaching leaders on creating and executing personal development plans with their direct reports. These “PDPs” were competency-driven, meaning we coach behaviors rather than specific tasks. A competency that many struggle to get right is dealing with ambiguity. No surprise: most of us hate change, we fear uncertainty, and we like our routines: we are creatures of habit, we like to say. To successfully deal with ambiguity, the behaviors include being present in the moment, knowing your resources, communicating openly, and making decisions with limited information, not waiting to see the whole picture.

Few deal with ambiguity better than preschool teachers. Our CEOs should shadow teachers as required “on boarding.” Better yet, more teachers should be made CEOs, or at least paid like it! Teachers live in the moment with their kids, looking for opportunities to turn every day experiences into lessons, going with the flow, embracing change, helping their kids be part of a process rather than only gears in the machine. We all want to be part of something, and working in cooperation helps us achieve a common goal.

Isaac, Mary’s Donkey; Holiday Program, 2016

Showing Up for the Holidays

Cancer is filled with uncertainty. The rhythm of my life is monthly chemo, bi-monthly brain scans, repeat until the tumor grows back. In the words of my neuro oncologist, “the probability that this tumor will not recur is highly unlikely.” My life is waiting and uncertainty. If brain scans are stable, that is, show no tumor growth, what therapy is working and should continue? If we see tumor growth on the next scan, what treatment failed?

My therapies include (or have included) radiation, chemo, Optune Tumor Treating Fields, ketogenic diet, diffusing essential oils, and nutritional supplements. I monitor these therapies closely to narrow variables so success or failure can be attributed to a therapy, but all this is dealing with ambiguity, attempting to make decisions based on limited information.

Of course the biggest uncertainty that my wife whispers in my ear as we share a bedroom with our sleeping baby in the crib beside our bed, usually the older two boys have found their way in to snuggle, and the five of us are tightly packed in these close quarters, reminded that we’ve given up our own space to move in with my parents, and they have given up their space to welcome us, is that each Holiday, this Holiday, could be my last Holiday, or the last Holiday that I feel well enough to be out of bed, attending Holiday Programs.

This is why I go to see my kids dramatize the nativity, even though I attract strange looks, accidentally step on people’s feet, and risk seizure. This is why I show up, because each moment with my family is a sacred moment.

Learning Lessons

We can draw lessons from my experiences because they are not only my experiences: they are our experiences. We all face uncertainty. We all face difficult decisions. We all have individual goals and have to balance our desires with those of our community. What I am learning through writing this blog is that dealing with a grade IV glioma, a primary brain tumor, a disease without a cure, is that my life experiences are distilled, different in degree, maybe, but not different in kind or type from the challenges we all face. We walk a similar journey. I give voice to our shared struggle like tasting a concentrated ingredient on its own makes it easier to pick out in a dish.

Here are some more of the lessons I am learning this Holiday season:

Put your individual hang-ups aside and recognize we all need help from family and friends. Focusing only on yourself leads to a Hobbesian state of nature: psychologically damaging and fear-driven. Ask for help! Cooperative living is peaceful living.
Do what our teachers do: deal with ambiguity. Do not fear uncertainty and change; embrace it. Become comfortable with limited information and closely monitor when your attempts at solutions work and when they don’t. Adjust next time accordingly.
Most importantly, show up! We may have a hundred reasons not to attend an event, family gathering, party, dinner, or whatever, but taking on a challenge today and making it through is better than putting it off until tomorrow and never getting the chance.

Happy Holidays, friends! I’ll see you next year. 😉

Me and Whit, watching the kiddos; Holiday Program, 2016

Patient Empowerment and Sticking to a Treatment Regimen

Recently I have been talking about patient-centered healthcare, and I offered a philosophical take on patient empowerment, drawing from my own experience. One important suggestion I advanced is that both patients and medical teams share common ground: asking why? In this post I focus on the patient experience. In the future we will see this question framed for researchers.

Patients are often frustrated, disgruntled, and disengaged when they are not enabled to speak competently to their own treatment. I suggested a medical team is accountable to empowering patients by facilitating understanding of what to expect from treatment, therapy, or a special procedure. Most importantly, the onus is on the medical provider to illuminate why an order is an important component of a person’s plan of care. Empowered patients are more likely to take an active role in their care, treatment, and recovery. Recall a recent medical intervention, and answer the following questions: Why has my doctor ordered this test? Why have I been prescribed this medication? Why is this therapy recommended for my particular diagnosis? This is a nice litmus test for the health of the dialogue with your primary care provider. I also hope this activity reinforces the notion that patients knowledgeable about their provider’s decision-making are more engaged and diligent when sticking to a treatment regimen.

Speaking of sticking to treatment regimens…

Deserving of its own post, I am contemplating discontinuing use of the Optune device (tumor treatment fields (TTF)). This recently-FDA-approved (for glioblastoma) durable medical equipment (DME) slows the growth of tumor cells by emitting an alternating electric field targeting the site of tumor growth, disrupting the process of cellular division (mitosis). A full description of the therapy quickly becomes complicated, and to wrap our minds around the mechanism of treatment, we would need to get into the weeds with theory and terms, including mitotic spindles, apoptosis, and the molecular dipole moment. Of course, I would have great fun blogging on this topic, but my fun may not leap off the page (screen). You can let me know in the comments, if you want to hear more. Regardless, as I consider continuing TTF therapy I seek answers to the contrastive (why?) questions I asked you to consider from your most recent medical intervention.

The Optune is inconvenient, requiring changing the equipment, shaving my head, and cleaning with alcohol. It is adhered to my shaved scalp with medical-grade adhesive, generating heat, like wearing a beanie all day, with a bulky braid of wires running from my head to a two-and-a-half-plus pound battery backpack. It is neither fashionable nor kid-friendly, and midnight bathroom breaks are more cumbersome when you are plugged into the wall socket like a floor lamp.

Levity aside, wearing the equipment complicates transferring my one year old to his crib for bed; it frightens my three year old who has taken to yelling “no, daddy!” when I walk in his room; it impedes my ability to grab impromptu dinner with my wife and walk the Cultural Trail, without first thinking through stowing an extra battery or two and working out a jacket and hat combo to complement my three-pound backpack and headgear. Psychologically, wearing such equipment constantly reminds the wearer: you are ill; different; set apart.

An important question remains unanswered: why is this particular therapy recommended for my particular diagnosis? The fact of the matter is this. Nothing else has stopped GBM. There is not empirical data to support alternatives to TTF therapy–at least, not empirical data that is FDA-sanctioned. Optune is an exciting, non-invasive therapy that has extended overall patient survival during clinical trial.

Discontinuing treatment offers a reprieve from inconvenience, maybe improved connection with my wife and kids, and a return to some normalcy during an unsettled time. Is this trade off worth sacrificing a statistically significant improvement in overall survival time?

The importance of answering this question cannot be overstated. My reality may diverge in severity from the medical decisions you face today. To put it in rather stark terms: every eight weeks I endure a 40 minute brain scan followed by an appointment with my neuro-oncologist (NO) to hear whether my cancer is growing. There is obviously much at stake, and imagine my state of mind should I discontinue TTF therapy, and subsequently discover tumor progression on an upcoming scan.

I encourage us all, not as a gloomy reminder, but for your thoughtful consideration as spouses and family, to entertain the types of treatments you are willing to endure, what side effects are tolerable, and when you would decide to discontinue treatment. The answers to these questions may inform your healthcare power of attorney.

Notice what is central to the preceding paragraph? These decisions are within your control. The decisions are yours to make. Decisions are to be made with the support of your medical team, and as I have already suggested, medical teams share in the responsibility of educating (hence, empowering) patients under their care.

Sticking to a Controversial Treatment Regimen: What Changes?

In the coming posts I will introduce the vitally important role nutrition plays in the prevention and treatment of cardiovascular disease, neurodegenerative diseases, diabetes, and, yes, cancer. Nutritional resolutions are difficult (for a myriad of reasons, proving their efficacy in a clinical setting among the most challenging) because for their success, nutritional resolutions require strict adherence. This remark is not terribly insightful, anyone who has tried out a new diet or New Year’s resolution already knows this. All aspects of food: our American cultural associations with the wholesome farm, rooted in our identity as an agrarian pilgrims, surviving on corn, and preserving in the root cellar, the happy cows from California (c), our governments’ farm bill and subsidies, Mark Bittman, Katie Couric, the paleo diet, kosher delis, meatless mondays, Weight Watchers, and Ramadan, and let us not forget Holy Communion. Table fellowship is central to physical, emotional, and for many, spiritual lives. Messing with eating practices is calling into question childhood memories, emotional coping mechanisms, religious practices, and evolutionarily-signaled cravings.

Calling into question eating practices is just what I plan to do. We will explore the ketogenic diet as a resolution for cancer and neurodegenerative diseases. Keto’s efficacy is contingent on the metebolic theory of cancer, so you know we will need to get that theory on the table. Keto is about our body metabolism; metabolic theory of cancer is about cellular metabolism. Be on the lookout for my next post: Our Cells; Our Bodies.

Cheers- AH

Philosophy in the Wild

The choice to tag line Glioblastology with, “A Graduate-trained philosopher documents his battle with glioblastoma” pays more than lip-service to my background and formal education. I completed undergrad and graduate work in philosophy at IU, Indianapolis (IUPUI). Outside of academia I held analyst, instructional design, training delivery, and project management roles with a Fortune 500 company and recently a smaller consulting firm. Through formal and informal channels I developed the following skills that equip me in my battle against brain cancer: research acumen, data analysis, written and spoken communication, and leadership. Surprising weapons to battle cancer, but my strength, resolve, and even attitude are thanks to the perspective gained by taking, what Thomas Nagel called, the view from nowhere: a view of the world that includes both one’s own perspective, yet sees oneself as a part of that view.

Adopting this view from nowhere, I value my own perspective; my own narrative, and I am eager to share the lessons that have benefited me as patient. But also, viewing myself as one piece of a broad portrait that includes family, friends, caregivers, a medical team, blog readers, and my sisters and brothers battling alongside me, I realize my unique draw is my ability to translate the technical into the digestible. Ultimately, it is my goal that technical terminology and narrative anecdote walk hand-in-hand; the former providing a background of knowledge against which the latter narrative plays out more vibrantly.

A good friend of mine—a good friend of the family, really, and a (retired) career professional in the pharmaceutical industry, gave me a lift a handful of times to radiation therapy. These were always great trips given the great conversation. Few life experiences shake us free from our own bullshit: a cancer diagnosis and adjusting to retirement after a successful career are two of those things—though, not likely so equivalent in other respects; hence, our conversations were relevant, poignant, thoughtful, and mutually appreciated. My friend shared the gist of a conversation he had with an oncology friend of his. It went something like this. “GBM is a terminal diagnosis, and difficult to deal with, but few of us have the opportunity to gain insight into our own passing. Think of the people on their deathbeds, wishing they had done this or that. Adam has an opportunity to consider those things he would like to make a priority.” Dead on. A benefit of receiving a difficult medical diagnosis is receiving, with the bad news, an opportunity to revisit priorities and align actions with values.

Writing this blog carries worries: worries about my many terminological and theoretical mistakes, worries about circulating misinformation—though, I do my best to perform due diligence and write with integrity, worries about sustaining the engagement of my audience, and worries that hours spent reading and writing, posting and sharing, turn out to be of little use to myself and others, now or in the future. Worries notwithstanding, the alignment of my actions with values encourages me to press on, speaking with the voice I trust, which is my own, informed by research, eager to offer new insights into old problems, helping others discover the joy of research as it informs a more intimate connection to our context, better relationships with our medical teams and caregivers, and feelings of empowerment that we may elect to participate in our care and treatment more actively, less passively.

I think this is what I mean by ‘Philosophy in the Wild’: the discipline is highly technical, specialists seemingly writing only for other specialists, and those unfamiliar with the jargon, unable to join the conversation. As with physical barriers, emotional barriers, legislative and systemic barriers, folks create barriers against our better judgment. Within philosophy much has been invested to understand human inference, reasoning, and decision-making, yet the technical nature of the discipline, the disproportionately high rates of white, male, and middle class undergraduate and graduate enrollment, the disappearance of tenure track professorship, and the adjunct faculty crisis and contribution to growing income inequality and poor access to healthcare reflect institutional barriers erected that stand between philosophers, studying reason and inference, and a general audience who would benefit from learning more.

The barrier I hope to break down for you is to provide tools to approach the study of your own diagnosis and treatment, informed by our best attempts to describe reasoning and inference. Not to dissent or deny treatment, but to understand why? Why this treatment, and not another?

Here are my tested skills, weaponized for battle against brain cancer: research acumen, data analysis, communication, and leadership.

Why?

Patient-centered healthcare is about empowering the patient to engage in their own treatment, care, and recovery. Doctors often prescribe medication, therapies, write referrals to specialists, and order tests, yet how often are these instructions offered in such a way that the person receiving care is empowered to articulate why the order was given?

I sat for my vile of blood to be taken for regular CBC, checking counts following a Temodar week. My veins are good, my demeanor calm, and my sleeves rolled up. The gray vinyl armrest tinged with blood, from a quick cleanup job. I am inclined to grab a blue glove and sani-wipe from the wall-mounts to volunteer a more thorough pass when a woman is called in and directed toward the seat next to me. A curtain separates us. She begins, “I don’t know why I am here. My doctor didn’t tell me about any lab work,” she grumbles, frustrated, disgruntled, and I get it. Our lives are busy. Where can I save time? What will I make for dinner? Why am I here?

I am a cancer patient, and like mallrats, cancer patients are clinic rats: we have had daily radiation therapy, chemo, we give blood usually every week or two, during therapy weeks. I have brain cancer, so I have an MRI scan every eight weeks. I get to wear scrubs on scan days! The hospital billed insurance $115k for my debulking surgery, so I’ve learned for what procedures Anthem requires a pre-certification. I like to interpret my own labs available in my electronic health records because I’m starting to get into some biomarker ranges concomitant with my nutritional choices. All this is to say, I’m a happy stick for the nurse. Woman on that side of the curtain: she is not.

See how we are different? What could her doctor have said in 30 seconds during an office visit to save our nurses some anxiety at the lab—and maybe get that old blood cleaned up?

I am invested in my care, treatment, and recovery because I have received treatment from medical practitioners who help me understand why such and such treatment is required. This has sparked my own research, examination of the facts, and seeking to answer that all important why?

What’s to Come?

There are competing theories to best explain the origin of cancer. The accepted view is that cancer is caused (primarily) by genetic mutations that cause cancerous cells to rapidly divide, metastasize, and obstruct vital body functions, leading to morbidity. The acceptance of this theory—the genetic theory of cancer, drives clinical practice. Theory informs our treatment options for cancer. Radiation therapy and chemotherapy among them, targeting and ideally impairing the cell division processes of genetically mutated cancer cells.

The medical community asked itself a question, and this question, although steeped in decades of clinical research, empirical findings, replication studies, and analysis, is not dissimilar from the question on the lips of the woman on the other side of the curtain. She is curious, why? The medical community is responding in clinical practice to the theoretical question: if cancer is a genetic disease, why should we treat with this therapy and not another? A more fundamental question is, why should we accept the genetic theory to explain the origin of cancer and not a competitor theory? We have uncovered further considerations: what makes for an acceptable theory? Why are some theories accepted and not others? How does theory acceptance drive clinical practice? Maybe most interesting to readers: what other cancer origin theories are out there? What clinical practices are impacted should the community accept an alternative theory?

Philosophy can help us, out here, in the wild. In the next post I will get us thinking about alternative cancer origin theories by way of discussing our cells and our bodies. Medical theories are data. Once two or more competing theories are on the table, we can speak to the reasoning method called inference to the best explanation (IBE). Good news! We are already thinking like someone trained in this method! The late philosopher of science Peter Lipton asserted that so-called contrastive questions (those of the form: Why P and not Q?) are central to the IBE method of reasoning.

Cheers- AH