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.

Coming Together! Inside My Head: Public Talk on March 5, 2017

What Will I Talk About?

Glioblastoma is an aggressive brain cancer that affects mostly 50 and 60 year olds; though the disease is not restricted by age. High grade gliomas are present in all ages, from children to young adults, 30-somethings like me, and those decades older than I am. I started a journal the day that I went in for the MRI scan that revealed my primary brain tumor; I journaled the days before my craniotomy and tumor resection; I journaled in the days following my awake brain surgery. I recorded my thoughts the evening after receiving the diagnosis of glioblastoma multiforme (GBM), a killer that takes the majority of patient lives a year and half following diagnosis. I journaled my way through acute inpatient rehabilitation, and my journal is the basis of the blog I started after hospital discharge.

In this public talk on March 5, join me for an hour long immersion into my personal walk with brain cancer. I bring to light many of the anecdotes, emotions, lessons, and punch lines that so far have only existed inside my head.

Where Do I Find Event Details?

Many of you have responded with excitement for my first public talk I am sharing on Sunday, March 5, 2015, 3:30pm-4:30pm on the south side of Indianapolis. In this post I wanted to hit a few of the highlights that are coming together as we plan for the event. Following these quick-hits highlight is a high-level agenda describing how our afternoon together will be spent. Here is a link to the public Facebook event page. If you have not done so, click GOING if you can make it in person. That will help advertise the event, and aid our planners with room set up.

Highlights

  • Interest has been immense, humbling, and exhilarating. I have friends from healthcare, academia, food service industry, personal friends, and the faith community showing interest. I cannot wait for us to rally together from so many different paths. Following my talk we will have light snacks and time to connect.
  • For my friends with young kids. Please join us. CHILDCARE IS OFFERED. Email your kiddo headcount with ages to event planner Lindsay by March 1 to help lock in the right number of sitters.
  • I know several of interested folks cannot attend in person. The event will be broadcast on Facebook Live from my personal page. Feel free to “follow” me on Facebook to see my posts and live broadcasts.
  • Following the event the video will be posted to this blog.
  • Donations will be accepted for my young family during the event, and a silent auction is arranged. Please arrive at 3:00pm if you would like to participate in the silent auction.
  • A portion of proceeds from the event will be donated to the American Brain Tumor Association (ABTA).

Working Agenda

The agenda is built around two main ideas: first, that we are a community of friends, patients, caregivers, and professionals, and we all have stories within us to learn from given the chance to share. Second, it is our relationships that sustain us through times, good and bad. The agenda reflects these ideas of story telling and connection.

  • 3:00pm, doors unlocked to check out silent auction items. Adam and Whitney will be hanging around to greet friends and chat before the talk is underway.
  • 3:30pm, Whitney, my best friend and wife, will applaud a few key people for their help. She will cover a few housekeeping items, and introduce me.
  • 3:35pm, I will take the stage and share my personal walk with brain cancer. The talk should last around 30-40 minutes.
  • 4:05pm, I will field Q&A from those gathered in attendance. I am a fun medical case because I have managed to endure this battle so far with little cognitive impairment. I have much to say, and I want to do my best to address your questions.
  • 4:20pm, silent auction winners are announced.
  • 4:30pm, light refreshments are available and Adam and Whitney hope to chat with folks one on one who can stick around.

Social Media

One of the most valuable communities to me has been the #BTSM (Brain Tumor Social Media) Twitter-based/online community. Despite our geographic and often demographic separation, our shoulder-to-shoulder battle to survive brain cancer connects us.

Instragram pictures, Facebook posts, and tweets are welcomed and encouraged from anyone attending the event or helping us with coverage. Please post using the hashtags #BTSM #GLIOBLASTOLOGY and #AandWTumorTakedown

Please reach out with any questions you have! I can’t wait to see you on March 5.

 

 

You are Invited! Inside My Head: The Personal Story of My Walk with Brain Cancer

Local (Indianapolis area) friends and supporters, I am excited to share information about a public “talk” I am giving on Sunday, March 5, 2017, 3:30m-4:30pm on the south side of Indianapolis in a large multipurpose room at Friedens UCC, 8300 S Meridian. During this narrative/anecdotal speaking engagement, I will share lessons gleaned from my battle with brain cancer. I hope the talk is interesting to people who have been following me online or through my blog, and I intend for the “lessons” to be applicable to a wide variety of folks.

The talk will give life to the themes you find here in this blog: considerations of the patient experience, insights into the traditional doctor-patient relationships, and thoughtful words about engaging with friends or family who face difficult medical diagnoses. I will bring my narrative to light, and I hope we may connect socially after my talk as we enjoy some time of refreshments in a casual environment.

The following is a link to the public Facebook event. Please feel free to add yourself to RSVP, invite others who may have an interest in the event, and share to your wall or a friend’s.

Facebook Event Page: Inside My Head: The Personal Story of My Walk with Brain Cancer

For non-local followers, I plan to incorporate Facebook Live into the event. I will not say much about that here and now, since I would rather see friends join us in person than find us online, but I hope to reach many friends, and either live broadcasting or post-event video sharing, I will be sure to accommodate whoever can’t attend in person.

Ideas for topics to discuss during the talk? Leave me comments, email me, or tweet tweet tweet.

Can’t wait to see you Sunday, March 5, 3:30pm! Be there or, you know, be [ ].

Click the following link to download a PDF even announcement. Feel free to pass the PDF on to friends via email: ahayden_inside-my-head_3-5-17