Inside My Head, Now on YouTube

On May 13, 2016, Adam was ordered to a “stat” MRI by his primary care provider. The scan revealed a 71mm primary brain tumor that would be diagnosed as glioblastoma multiforme (GBM), a deadly and aggressive brain cancer. In this talk Adam shares his journey (so far) with GBM, and he highlights lessons that are applicable to everyone.

Please click to view the one hour talk now available on YouTube.

Finding Purpose between Power and Helplessness

I write this post a day after delivering a public talk, Inside My Head: A Story of My Personal Walk with Brain Cancer, and a day before my next eight-week MRI scan. In this post I report the strange emotional dichotomy, recognizing my power of positive impact through public speaking while suffering under the helplessness of the course of my disease.

“In two days I will be changing into hospital socks and oversized scrub pants. I consider the ongoing depersonalization of the American healthcare patient: name, date of birth, diagnosis c71.9, malignant neoplasm of brain, unspecified; one-size-fits-all standard of care, cinching tight the drawstrings on the waistband of my comically-too-big scrubs while I shuffle to the MRI bed.” I delivered these words Sunday afternoon, March 5, to a packed house of 250 or more friends, family, and colleagues gathered in support of me, my wife and young children, and to make a dent in median overall survival by raising money and awareness for brain cancer research.

It is the day after my talk. It is the day before my next eight-week MRI scan to monitor disease progression. This morning I suffered a minor “event” or “episode” or something. I lost my footing in the living room, grasping for a door frame to prop myself up. I tapped out two more emails on my iPhone when seeking respite on the couch following my “something.” I continue my “work”: seeking venues to deliver talks, spread awareness, and raise funds to support my young family after I am long past useful.

I returned home last night following an unmatched display of support from  my community. I hugged my older boys for bed. I rocked my youngest for sleep while participating in the monthly #BTSM chat. This month’s topic: survivor guilt. Other persons with with brain tumors, many living with the disease longer than I have, poured out the contents of their hearts in 140-character confessions, searching for purpose, meaning, and self-worth in contrast to the ever-lengthening list of old friends, now deceased. The longer you walk this road with others, the older friends are lost and new ones join in the march. What lessons live on from the last generation to lend to the newly diagnosed?

 

My youngest son received his 18-month check-up this morning. He is a dot on a curve representing a percentile. All lines trend up. At a point in all of our lives we reach an apex and become a downward trending dot.

 

My wife returns home with our little guy in tow She notices me hunched over my phone on the couch, seeking respite yet tapping away.

“You have to rest!”

There is no resting for me these days, only sleeping when tired.

“You have to take it easy.”

I tap on my phone to pitch my next talk, to schedule a meeting to contribute to a caregiver- and patient-facing website offering resources to people in the path of disease, to connect with the tweet-savvy to grow my network, to share my blog, to gain more followers, to carry out a mission beset by chemotherapy, fatigue, and nausea. To find self worth in my own personal quest toward a meaningful life.

“Sent from my iPhone” isn’t just a status, or business, or to indicate traveling correspondence, but to assert, “I may be nauseated, but I’m not dead”; “I am ‘working from home’ under a blanket, tapping away at the lessons to lend to the next generation.

 

It is the day after my talk, the day before my next scan. Name, date of birth, scrub pant size? The same system I criticize, I trust myself to its care. I cry over this journal today because I am afraid; terrified, really. Do not mistake my comfort and articulation when discussion my morbidity or mortality for hope that I may evade the advancing line. Acceptance does not ameliorate fear; it embraces fear. If one-size-fits-all standard of care depersonalizes the American healthcare patient, we must recapture our personhood. What is more personal; what is more human, than realizing our own mortality. “The path through fear is familiarity,” I spoke yesterday.

The day after my talk, the day before my scan. I am seeking purpose somewhere between the power of my influence and helplessness of disease progression. Between power and helplessness, a person’s place in the world, surviving.

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.

(Almost Live from) The Greatest City in the World

“Good afternoon, passengers. Your Air Bus 380 is equipped with four emergency exits: two located in the aft of the aircraft and two over each wing. In the case of seizure, pill bottles will fall from the overhead compartment and passengers seated in the exit rows will be administered 2,500mg of Keppra and 100mg of Vimpat to keep from accidentally dislodging the emergency exits. Remember to swallow your own dose before helping with the dose of the person seated next to you. If you require use of our seat-side CT scanner, please press the call button and a flight attendant will assist you. Don’t forget about our complimentary peanuts and IV saline.”

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Adam, Pre-Seizure at Airport Harry and Izzy’s; December, 2016.

I often forget that I have cancer until I am reminded by the characteristic head-tilt, “How are you?” that presents more often in the patient’s friends than the patient. Adam’s inner monologue, “What’s wrong with this person’s awkward expression and head tilt? Ohhhh, right, the cancer.” “I’m doing okay, thanks.”

Unfortunately, these past several days my diagnosis has not been so easy to forget. I mentioned on Christmas night that it had been two years since my first seizure, and that I had experienced one that day, Christmas, of this year, too. Seizures are the common feature of my glioblastoma that (so far) escapes management by medication.At their peak (pre-cancer diagnosis), I was enduring three or four seizures daily; now, I experience one or two weekly. My seizures are not convulsing, loss-of-conciousness episodes (well, once or twice they have been), but often these events are more subdued. I experience a light-headedness I describe as two helium balloons inside my head, one ballon positioned near each  temple, and my head floats along pulled this way and that in a sort of new age interpretive dance. (It is to the best of my knowledge that I am not actually dancing–only feeling that way. Whitney says I look “twitchy.”)

The light-headedness often turns to dizziness, a sensation that starts at the base of my skull and wraps toward the front of my head. (Strange, no?) It is not every time that my seizures lead to loss of consciousness, but the times that they have, this stepwise progression of light-headedness and dizziness have been precursors. That is, not every time do I lose consciousness, but every time that I do, I am first light-headed and dizzy. Hence, I take my light-headedness rather seriously (a good rule of thumb for all of us, I reckon), and I experience increased anxiety, fearing this event will be one, which I lose consciousness.

“I do not do well in big open spaces with fluorescent lights,” I reported to Whitney, “You know, like airports, huh?” she replied. The airport is where we were today when the unmistakable light-headedness struck. We were on our way to visit two of our best friends in New York. On the hit list: ramen, deli, pho, Dante and Wolf and Deer to visit my (practically) brother Michael and his beautiful wife, Brooke, behind the stick at each bar, respectively. Spending time with B and O, our friends, is a highlight of our day/week/month/year/other incremental time slices. B and O balance each other, and this makes their relationship similar to ours, me and Whit. For B and O, and me and Whit, our friendship is so close; our experiences worlds apart and yet intimately connected. I miss them. We miss them. It is a real bummer that I wasn’t well enough for the flight.

Sitting at gate A11, Whitney stood up to inform the Delta gate agent that the Haydens in seats 8A and 8B would not be boarding this flight; moreover, may we request a wheelchair to get us the hell out of here.

Here is something terrific: I have already forgotten my cancer again. Thinking of our good friends, bringing to mind the special qualities of close relationships, sharing a piece of my experience with you quickly replaces any distractions brought on by light-headedness or feeling bummed out.

Our lives are experience-rich, and I would rather focus on the experiences of love, friendship, support, and balance, rather than light-headless and dizziness. This is the walk of cancer, isn’t it? Dizziness and balance, light-headedness and support.

Still, that ramen, pho, and pastrami has to wait, and I am not sure what positive spin I can make of that.

Many of you know Whitney is running her own blog over at Faith, Hope, and Wine. Click to read her take on today’s events.

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.