New Resource for Advanced Illness; My Contribution

Jim Rosenberg is a nice guy and a good conversationalist. Jim is not one of these shoot the shit, “how’s the weather?” kind of conversationalists, but more of the Quaker, “how is it with your soul” types. Jim is the conversationalist who actively listens. He is not waiting for his to turn to speak. Rather, he waits to rebound spoken words back toward the speaker in such a way that helps you realize there is something hidden beneath your spoken words that you didn’t realize was there, lying prone beneath the noise, when you spoke them. Jim teaches you about yourself while he interviews you. Jim is appreciative of your time, but it’s often the partner on the other end of the phone (or Skype video call) that most values the experience.

In short, it is a pleasure to speak with Jim, and that pleasure was mine earlier this month (March 13, 2017), when I interviewed with Jim for his innovative resource targeting patients and caregivers of folks facing advanced illness and the end-of-life. Jim’s resource is called the I Know Something Project (IKSproject.com), and though in its earliest stages of development, the powerful impact of a mature and fully fleshed out product is not difficult to imagine. Jim and his late wife Amy radiate love. If you wonder how it is I use ‘late-wife’ and ‘radiate’ (in the present tense), in the same sentence, you need only connect with Jim to see Amy’s light and their love shine through Jim’s soft eyes and focused gaze.

 

Amy’s passing left both Jim and Amy feeling overwhelmed, cast from the life they knew and navigating seemingly uncharted waters, yet as Jim observes, everyone faces death, why should there be such a void of helpful content? Enter the I Know Something Project:

The “I Know Something” (IKS) community captures short, personal video stories from people who have faced the hard moments in life that we don’t talk about every day. It’s about giving voice to every one of us and all we know. We then add links and reflection exercises to the stories to make it easier for everyone to think about their unique situations and specific needs. So in our own time, at our own pace, and in our own way, we can figure out answers surrounded by others who have been there before (“About this Project.” I Know Something Project. https://iksproject.com/about/).

That Monday afternoon in March, Jim and I talked and laughed for over two hours while I rehearsed my life over the past ten months, battling terminal brain cancer. My first edited “story,” titled “Choosing Quality of Life Over Treatment (link)” is now available on the IKS website. Those who know me, you’ll recognize my familiar, humor-driven, yet thoughtful tone, and I hope now you’ll know something about the person on the other side of the camera, Jim, a nice guy, and a good conversationalist.

 

Please pass the IKS project on to others who may find the resource of great value, and check back for new stories to be added all the time.

If you would like to share your story, let Jim know through the site. You can also reach him to talk about any question at jim@iksproject.com.

Direct link to my edited story: https://iksproject.com/choosing-quality-of-life-over-treatment/

No Escape from Death; Might as Well Embrace It

I think about death often. Probably two or three times each week, and once each week I offer death a really thoughtful hour or so of my attention and consideration. I am a smart guy, and I am well studied in the works of predecessor smart people who were thoughtful enough to offer death their attention and consideration. Many of these people recorded their thoughts in memoirs, blog posts, columns in the weekly standards, or by some other written medium that is available to us to learn from their considerations of death. In this post I lend some of the lessons I gained through my thoughtful considerations of death.

You may be inclined to think, “Adam discusses death often; ought we be concerned?” You ought not. It is my consideration of death and of palliative care that the terminally ill have a responsibility to bring discussions of death out of the shadow of taboo and into the lights of conversational norms. I intend to live for many more years, but shifting norms takes time, so consider this a long-term goal.

I started offering honest narrative accounts of my personal walk with brain cancer while still in the hospital. My support network is large and diverse. My background and education is likewise. My dad, a career pastor, like his dad, and his two older brothers, taught me through observation that people are always getting sick and dying. There is something unsurprising to me about death–certainly unfortunate, but unsurprising.

The organization of the institutional church is not dissimilar from the organization of the private sector: as a person increases in position, from youth pastor, to associate, to senior pastor, with a higher position on the institutional ladder comes increased responsibilities. The senior pastor is equipped to deliver the weekly sermon to a corporate body of two or three hundred because she has served her time as an associate making hospital calls to the sick and dying. The private conversations in an inpatient hospital room equip the junior pastor with the lessons to take to a broader audience. You learn, or at least are granted insight into, the values that matter, when someone dies while you hold their hand and are bonded in prayer. Like a trades-person’s apprenticeship, a medical residency, or a graduate teaching assistantship, the role of a senior leader, as a mentor once told me, is to let your up and coming leaders make mistakes but step in before the person becomes a liability.

People getting sick and dying is weaved into my background, but, I am careful not to claim that I have learned the experience of what a person feels when ministering to the sick and dying, I put plainly that I only know of this experience by watching my dad put on his clergy name tag, grab his Bible, and head out the door for a “busy day of visitations.”

 

Here is one experience I do know. I shook the hand of a doctor assigned to my case. He introduced himself, asked me to state my diagnosis, and quickly he said, “You know you’re going to die from this, don’t you?” He continued, “I think it’s important for patients like you to know we are going to treat you, but not cure you. The long-term survival for patients with your diagnosis is 0%. We just don’t have them.”

 

Here are two more experiences I would like to report to you now.

First, Sunday, March 5, 2016, I paced the stage of a multi-purpose community room, an expansion added to the church where my dad is the senior pastor. I delivered an hour-long narrative account of my walk with brain cancer. Following the talk several people greeted me and said, “Adam, I really enjoyed your presentation.” Inevitably, many of these people quickly back pedaled for fear that by some stroke of schadenfreude their enjoyment of my discussion of my terminal illness violates a social norm that we are to avoid interest and enjoyment in discussions of death, or to admit that we might gain entertainment while being moved under the dark cloud of an incurable disease.

This simply is not the case. My decision to present my story is not a cosmic “gotcha” joke.

Here is my story, it is sad, and moving.

Psyche! You enjoyed it, you jerk!

I tell my story because we are mortal. We are vulnerable. We get sick and die. There is no escaping this basic truism of our pinpoint existence in the multi-billion-year universal journey of an expanding cosmos. We would do better to embrace it. To discuss it. To enjoy the discussion of our demise. A palliative care doctor told us during a discussion of death and dying geared toward persons with brain cancer, “we plan for retirement, should we not also plan for own death?”

How terrible it must be to be the spouse, close kin, power of attorney, or healthcare representative of a person and patient whom never broached the subject of their own certain death? To take extreme measures? To continue hydration and nutrition? To intubate, vent, crack open the ribs and manually massage a stopped heart.

The inability to embrace our certain death places a burden on our loved ones for which we will not be responsive to help guide the conversation. I think of no insult greater that I may commit against my wife than to put her in the position of wondering, “What would Adam want in this situation?” How tortured she would be? How tortured her relationship with family and friends must be when differing opinions would be settled by everyone’s speculation about what Adam would want.

 

Second experience, and less of a definite experience, and more of a general attitude directed toward me and my family, is the speculative folk theology of the attitude of God toward the faithful flock. Here are a few claims that you have no doubt heard, and perhaps a few you have spoken yourself, and be not afraid, shamed, or judged by my reporting of these claims. Instead, I invite you with open arms and a warm smile to consider with me the implications of our best-intended statements about how you interpret God’s wishes toward the sick and dying.

“God will not put more on you than you can handle.”

“God does not throw curve balls.”

“God has a plan for you.”

“It is God’s will.”

What implications might we draw from this portrait of a supreme deity? Ultimately, each of these statements imply that God has a hand either in putting us through the gamut of suffering and death, or that God may lift our suffering at any moment, but decides not to.

As we say in philosophy, I only offer a rough sketch of these theodicies–explanations for evil and suffering in the world. I have only glossed these complicated views. But to that complaint, I have this to say, these claims are rarely spoken by a thoroughly trained theologian who builds her claims on a foundation of systematic theology. Instead, “God does not put more on you than you can handle,” is spoken by your friends, family, next door neighbors, and in greeting cards from Hallmark we sign our names to and drop in the mail.

The duty, the responsibility of the ill, is to interpret these statements as well wishes and sympathetic support during a difficult time. The duty of the wisher is to extend greetings with the same reverence that death demands: something so big that not one of us will escape it.

Better to embrace it.

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.

Suffering and Personal Identity

Suffering, death, and loss lay at the heart of a person’s connection to their sense of personal identity. It is in our most vulnerable moments that we come to know those things most dear to us; indeed, the people, possessions, and pursuits we are most afraid to lose come rushing to the surface when we confront the possibility of their actual–not merely fantasized, loss.

Paul Kalanithi in his excellent memoir, When Breath Becomes Air, relates his own pursuit of neurosurgical excellence through residency cut short by his stage IV lung cancer diagnosis as a building of potential, “potential that will now go unrealized” (120). Kalanithi reports that it is the duty of the neurosurgeon to learn what renders a patient’s life worth living, and either save those things or allow the peace of death if not (113). Kalanithi then interprets his own terminal diagnosis as a loss of his identity, by reader inference, as a loss of those things that makes his life worth living; things that for Kalanithti cannot be saved. He learns this truth first as clinician, then as patient. A dichotomy few of us experience, except by virtue of accepting the gifts offered in such a moving memoir as Dr. Kalanithi’s.

This difficult truth guides Abraham Verghese to pen in the forward to Kalanithi’s memoir, “See how brave it is to reveal yourself in this way” (xix).

 

Suffering is a gateway toward untold truths. An identifier to mark one as separate, as picked out, as an exemplar, not one of the norm, as statistically set apart and standardly deviated. That through suffering is the path to learn one’s identity, or to identify with oneself, and I am not sure which direction the causal arrow points in these cases. Whether to know oneself intimately is reveal one’s identity, and suffering facilitates this discovery. That suffering allows us to plumb the depths of our selves. Alternatively, that it may be the case that to identify oneself in a reflexive and self-realizing manner is to make ourselves vulnerable to suffering. That identifying with oneself, renders us vulnerable in an exceptional way that those who do not reveal themselves may be injured but may not suffer. That those who have not ventured to explore their inner lives are somehow less vulnerable to the suffering that leads to beauty, not merely death and loss.

If we are to make sense of suffering, we first must make sense of our selves, and regardless of what suffering may lie ahead, we are better to heed this invitation to know oneself. Even if it makes one more vulnerable. Vulnerability is the ticket to beauty.

 

Many have said, “Adam, you are an inspiration,” and I think, “how brave it is to reveal oneself in this way.” We are each of us inspirational when we seek to know ourselves and to reveal ourselves.

I wonder, do I suffer? Do I know my true self? Do I know what makes my life worth living?

On the operating table when we (surgeons and I) decided to end the resection with residual tumor remaining in the margins of my surgical cavity, “especially anteriorly,” reads the operation notes, the decision was made for engagement with my children, not wanting to risk permanent left-sided paralysis, but instead, risking more expedient recurrence and death for the sake of running and chasing after my kids.

I am struck that my disease will reveal my mortality. A woman, a mother, in an online discussion forum, reports the final year of her son’s life following his GBM diagnosis, “I thought we would have more time,” she relates. It is his rapid decline that is most frightening to me. He was 32. He said, “I don’t feel like I have cancer.” (I have spoken these words.) Yet from a bad scan in October showing progression, he is in hospice by December, dead by January. All of this within one year of his diagnosis. His standard of care therapy mirroring my own. GBM leads to death; whether in six months or sixty, this is the unknown.

Let these narratives serve as further invitations to identify your own pursuits, that should you have to chose, should your doctors, should your loved ones, that your identity makes obvious to the world what they are.

 

Should we all be brave enough to reveal ourselves in this way.

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.