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.

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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.

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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.

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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. 😉

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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