Death and Dying

An Evening in Partnership with the End Well Foundation

Film Screening and Panel Discussion:

Sunday, November 3, 5:00pm, Thunderbird in historic Fountain Square, you are invited to a free public film screening of an Academy Award nominated film followed by a panel discussion that places researchers, doctors, and patients in dialogue with the public in an informal, come-as-you-are setting to talk about the end of life! Panelists represent perspectives on death and dying, from Medicine, Medical Humanities, Philosophy, Religious Studies, and Theology. We want to talk about how we may end well to learn more about how we may live well!

Register here! Check out the Facebook event page here! And read on for more details, including a summary of our incredible panel!

Writing for The Atlantic, Erika Hayasaki (2013) declares in her article of the same title that death is having a moment. Death positive movements, including Death Salon, Death Cafes, and the End Well Project usher conversations about death and dying out of the shadow of taboo and facilitate dialogue to urge event attendees and participants to think critically about humanizing the end of life experience. You are encouraged to think about the end of life to inform how you live fully each day, and ultimately, how you might end well, in alignment with your values and goals.

The event is hosted by Adam Hayden, a young dad, husband, philosopher, and a seriously ill patient, facing a life-limiting brain cancer diagnosis. Adam is a 2019 End Well Symposium speaker, an annual event, with the goal to create a cultural shift to normalize conversations about mortality throughout our life.

The event features Academy Award nominated documentary End Game. This film follows hospice and palliative medicine clinicians as they facilitate end of life experiences with patients and families. End Game weaves together three stories of visionary medical providers who practice on the cutting edge of life and death, helping to change the way we think about both.

The Fountain Square restaurant and bar, Thunderbird generously agreed to host the event to de-institutionalize these themes and create a come-as-you space for public engagement.

The event will be held on Sunday, November 3, 2019, from 5:00pm – 8:00pm. The event is free and open to the public, but attendees must be 21+. Thunderbird is offering their menu available for purchase. Thunderbird is located at 1127 Shelby St, Indianapolis, IN 46203.

The event kicks off with a “virtual” event welcome from the film’s executive producer, Shoshana Ungerleider, the 40 minute film will be screened, and Adam will moderate a panel discussion with audience questions. Everyone is encouraged to hang around after the panel to mingle.

An amazing interprofessional group of panelists include:

  • Emily Beckman, PhD, Assistant Professor of Medical Humanities and Health Studies (MHHS) at the IUPUI School of Liberal Arts and Adjunct Professor, Department of Medicine, at Indiana University School of Medicine
  • Andrea Jain, PhD Associate Professor, Department of Religious Studies at IUPUI School of Liberal Arts and editor of the Journal of the American Academy of Religion (JAAR)
  • Lyle Fettig, MD is Assistant Professor of Clinical Medicine at Indiana University School of Medicine, and he is Director of the Hospice and Palliative Medicine Fellowship program at Indiana University School of Medicine
  • Adam Hayden, MA is a co-investigator for The Brain Cancer Quality of Life Collaborative, an American Association for Cancer Research scientist-survivor program participant, and a Stanford University Medicine X ePatient scholar
  • Anastasia Holman, MDiv, MBA, ACPE Cert Educator, is Manager of Spiritual Education for IU Health System at Indiana University Health
  • Shelley Johns, PsyD, HSPP, ABPP is Adjunct Assistant Professor of Psychiatry, Indiana University School of Medicine, Research Scientist at the Indiana University Center for Health Services and Outcomes Research, Regenstrief Institute, and a Board Certified Clinical Health Psychologist at the Eskenazi Health Palliative Care Program

Please join us over a drink for this incredible film and critical discussion to follow.

Senator McCain: Living Well Until The End

A version of this post also appeared on the End Well blog. The End Well Symposium, taking place December 6, 2018, in San Fransisco, CA, is a “day of learning and connection as we engage with one another, across disciplines, to transform the end of life into a human-centered experience.”

***

On Monday, August 20, 2018, I held closed the gaping hospital gown with a twisted grip behind my back. I shuffled across the hall from a small dressing room into the radiology suite, set the locker key on a small table, and approached the large, humming MRI machine. The radiology tech draped a warm blanket across me, and she glided my still body on a flat bed into the open mouth of the large magnet. I breathed deep belly breaths for 45 minutes while images of my brain rendered on a computer screen in the booth outside of the room.

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Adam and Whitney share their traditional “pre-scan selfie,” August 20, 2018

For people living with brain cancer, these days punctuate the anxiety of our daily lives. The results of our scans indicate positive response to treatment — the best outcome; stability from the previous scan — the second best outcome; or disease progression — the worst of possible outcomes.

 

I have been living with the brain cancer, glioblastoma (GBM), for over two years. A disease many call “the beast.” A disease that one peer reviewed article named, “the terminator” [1].

 

Many in our brain-tumor community confront the reality of this terrible, life-limiting disease, and each of us spend countless hours wondering what we will do when we receive news of a “bad scan.” These conversations surfaced in our home this week as my wife and I waited for the results from my recent MRI.

 

While biding our time until our scheduled office visit with my neuro-oncologist to review the MRI images, we heard news from a dear friend facing progression of their disease with no treatment options. They wonder, what now?

Next, in this same week, came news of Senator McCain’s decision to re-focus his treatment from disease-focused to quality of life-focused. The McCain’s wondered, what now?

 

Then, we heard news of the Senator’s death.

 

Amidst this emotional news — public and private — my wife and I huddled in a small medical office with my neuro-oncologist. He told us my MRI scan was, in fact, “stable,” indicating no evidence of disease progression. We each took a deep breath before scheduling my next MRI and office visit in 12 weeks.

 

A refrain plays in our minds of words delivered by my oncologist two years earlier during our first office visit with this specialist when we heard my diagnosis: “It is extremely unlikely that you will not have recurrence.”

Translating this “medical speak” into plain language, my doctor was informing us that, despite aggressive brain surgery, my cancer will almost certainly return, or “recur.” GBM infiltrates the nooks and crannies of the brain, and it remains impossible to remove completely by surgery. Resistant to chemotherapy and radiation, GBM grows like tentacles through the soft folds of brain tissue. In short, my wife, family, and I expect to face the difficult question, what now?

 

The mission at End Well is affirmation: “[A]ll people should experience the end of life in a way that matches their values and goals.” Both dyingand livingwell are inextricably linked. The mission continues, “We are a diverse group of people who listen and learn from each other.”

 

Today, I reflect on the events of this week. Patients and their loved ones across time zones, including our family, close personal friends, and an American icon, all shared their experiences in public ways to teach and learn from others.

 

Senator McCain’s death came with quiet dignity and expressions of love from this wife and daughter — an alignment of values and goals. This is an opportunity to witness the aims of End Well manifesting in the life and death of a public figure.

 

How might we learn together in our own homes and in the public arena? In other words, what now?Join us in search of the answer.

Grieving the Life that Is Not; Accepting What Could Be

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

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

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

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

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

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

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

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

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

I grieve the approaching collapse of my wave function.

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

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

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

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

Though should I be candid.

I am very, very sad.

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

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

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

What Should Public-Facing Science Communication (#scicomm) of Cancer Research Look Like?

In this post, the first of two taking special interest in science communication (hashtag #scicomm), I offer my argument for the important role science communication #scicomm plays in sparking public interest in scientific inquiry, and closer to home, I make a case that #scicomm has a unique and vital role to play in educating our patient population to reinforce the notion of informed consent. A truly informed patient, I argue, experiences improved quality and prolonged length of life, not because they are science communicators, but beause informed patients make better decisions with respect to benefits and risks of treatment. The onus, then, is on science communicators to consider what their role may be in describing origin theories of disease, e.g. cancer, in a way that empowers the public.IMG_0210

 

The disease of cancer is prevalent: perhaps not surprisingly, given our near universal experience of having been touched by cancer in some way, through the diagnosis of a loved one, grandmother, aunt, brother, cousin, and so on, or struggling with our own diagnosis, so it is that cancer is among the leading causes of death in the United States. Identifying preventable causes of the disease largely drives decades-long improvement in patient mortality statistics. The identification of preventable causes of cancer is of great benefit to public health, as it drives legislative action to protect a citizenry from increased risks while acting as responsible stewards of allocated healthcare dollars, taking on board the well-supported hypothesis that prevention is less costly than treatment. Beyond prevention, we may also wonder what researchers know of the nature of the disease itself. Knowing that limiting exposure to certain environmental carcinogens, for example, allows researchers to know something of cancer by way of preventable triggers, but a curious researcher, as we hope all are, should want to know something of cancer qua cancer, as we might employ the phrase in philosophy. Knowledge of cancer in virtue of its causes fails to penetrate deeply into the realm of inquiry, the space where our researchers and theoreticians operate.

 

Here is a story to help us. My oldest son may ask why the moon looks like a big circle one night but can look like only a sliver other times? I would not be incorrect to tell him it is because different portions of the moon are illuminated at different times, but this response is not very satisfying. Anyone with kids knows the natural follow-up question is, why? Why are different parts of the moon lit at different times? Now I may respond that the moon itself does not shine, but the light of the sun illuminates the moon. The illuminated portion of the moon appears a certain shape to an observer on earth given the relative positions of the sun and moon to earth. My son will likely lose track of the conversation at some point. If he is interested enough, he’s had a snack recently, and the television is off, he may entertain me by paying attention while I build a model with a flashlight, his toys, and a ball to represent the lunar phases, but otherwise, he moves on and asks me the next night, why does the moon look like a big circle tonight?

 

Let’s shift back to our topic. Why did my friend get cancer? Your friend got cancer because he smoked. While not technically incorrect, this answer is not very satisfying. A natural follow-up is to ask why? Why did smoking cause my friend to develop cancer? Now we are beginning to seek answers to the types of questions that motivate our researchers.

These stories help lay folk like you and me, “the public” or “the nonspecialist,” those who have taken an interest in scientific questions, but who lack the requisite training, it helps us to engage more closely with academic researchers and their chief means of currency, the academic journal article. The answers provided to nonspecialists, like those I offer to my son, often are either unsatisfying given their nonspecificity and simplicity, or the responses are far too complex to be meaningful, and so nonspecialists are not allowed a seat at the table; no voice in the debate. Hence, we need models with flashlights, toys, and a ball. It is the responsibility of science communicators to build these models and to help nonspecialists along. Einstein reported that his earliest interest in seeking to understand the deep mysteries of the natural world was sparked as a child when he saw the needles of his father’s compass move seemingly autonomously. What deep mysterious forces are moving these needles?

Like his father’s compass did for Einstein is what I hope my conversations do for my three boys: spark their interest in understanding the natural world more deeply—whether that interest leads them to science, literature, theater, culinary arts, politics, machinery, craft, or engineering, there is not a single field or passion worth pursuing that does not benefit from a drive for deeper understanding of its “forces” that appear to the rest of us only as mysterious.

The burden on science communicators is great and the responsibility is one to take seriously because the models built by science communicators to help lay folks grasp deep concepts of the natural world by employing straightforward language, familiar concepts, and model building is not only an opportunity to help the public understand the power and priority of continuing to fund the sciences, but the public is also impacted in a deeply personal way as I may better come to know the hypothesized biological causes responsible for the development of my brain cancer, and I may find myself more genuinely invested in taking accountability for pursuing my treatment regimen if I better understand the mechanism of action by which my chemotherapy kills dividing cells by attacking their DNA, inhibiting mitosis (cell division), triggering cell death, or both.

Cancer mortality is declining, yes in some part to improved treatments, but largely mortality is lessened by identifying preventable causes of the disease. Prevention is good, going forward, but it is of little benefit to the 1.6 million Americans who received a cancer diagnoses in 2016. Effective treatment rests on a comprehensive and empirically tested theory of cancer’s origin. Patients and their caregivers are right to expect safe and accessible treatment that seeks to maintain or improve quality of life and prolong a patient’s life to the extent that is possible, while seeking to protect the first criteria. That is, my personal attitude toward treatment is that beyond some tolerable threshold, prolonging a patient’s life should not irrevocably violate the quality of her life. This balance is subjective, arbitrary, and in every case that time allows, the topic is best discussed openly with friends, loved ones, medical teams, and other interested parties. No treatment allows a patient to  evade death, but many available treatment options prohibit a patient’s wish to die well.

The private and often taboo topics suggested in the final sentences of the previous paragraph are hidden beneath a guise that medical researchers and clinicians invoke with the phrase, “informed consent”: that patients or their elected healthcare representatives, after having been made fully aware of risks and side effects associated with a given treatment, may elect to receive or decline a therapy with their consent, even at great risk to their quality and quantity of life, up to and including hastened death. It is the patient’s right, it is supposed, their autonomy, that a patient may choose to accept or deny treatment on the basis that the patient has been fully informed.

 

What I have said so far ties together researchers, clinicians, and patients in the following way: researchers benefit from intimate knowledge of pathology, clinicians tie their treatment recommendations to their understanding of the nature of the disease, and patients or their representatives consent to treatment on the condition that they be fully informed of the risks. Each of these parties are bound by their reliance on some working knowledge of the disease they either study, treat, or from which they suffer. Medical researchers and clinicians are licensed for their work after years of formal education, lab apprenticeship, or residency. The knowledge they have of their specialty warrants their expert status to make recommendations through research proposals, drug development, or clinical protocols. Patients consent to their recommendations on the presupposition that regulatory agencies and governing bodies maintain acceptable criteria of qualification and credentialing to place an acceptable degree of trust in these professionals.

A point I have made in public lecture and discourse is the following: medical professionals demonstrate their specialty knowledge and tacitly earn patient trust by trailing their names with such designations as MD, PhD, DO, RN, LPN, MSc, only to name a few, and with my asking for forgiveness for the many professionals whose abbreviated credentials do not appear on my list—their absence a sign of my ignorance, not your unimportance. I have received a craniotomy, eight MRIs, 30 sessions of proton beam radiotherapy, two CTs, tens of IVs, nearly 100 individual doses of chemotherapy, countless blood draws, routine vitals, and all I am is “state your name and date of birth.” When do I earn my CPT, certified patient, credential? I don’t, because I just made it up, and further because it flies in the face of the field of contemporary professional medicine whose aim is to treat patients and discharge them, not to celebrate them.

Should a patient be certified? Of course not, I am being rather absurd. Or am I? There are as many varieties of patients as there are diseses, and I am a patient, rather, I am a person who is driven deeply by inquiry to uncover the mysteries of the natural world. I stock my bookshelf full of medical school textbooks and popular medical science novels to intimately learn my disease. On March 29, 2017, I delivered two back-to-back lectures at Marian University College of Osteopathic Medicine (MU-COM) to mostly first and some third year medical students. Between lectures I was asked to make a slight modification from the first to second lecture by describing in slightly more technical details the characteristics of my type of brain cancer, glioblastoma. I mention this because while some may struggle to quickly find the words to describe the biological underpinnings of their disease, I have the opposite problem, that I must remind myself to trim back content before delivering an impromptu lecture on IDH mutations in high-grade glioma.

While I have not put in years of work as those serving on my medical team, and while I do not think that I set a reasonable baseline for what is or ought to be expected from patients, I do think that my hard work learning the competing theories of cancer’s origin enables me to be more engaged in my personal healthcare, and I am happy when my oncologist rewards my hard work by allowing our appointments to stretch to an hour, sometimes 90 minutes, as we wander off in conversation about theories of cancer’s origin or he reports about his experience at the recent conference he attended. “Precision Medicine” is the buzzword in cancer treatment these days, therapy that is made precise by targeting a patient’s cancer’s molecular markers, but this ability to identify my desire to share what I have learned, and my oncologist’s willingness to engage in this discussion, is sort of old school precision medicine. It is therapy that is targeted to my needs. It celebrates the informed patient.

I do set a bar for an informed patient. I ask my readers to consider the gulf between my hard earned knowledge of my disease, and the average knowledge of a patient without desire, training, means, or ability, given socioeconomics, education, interests, cognitive impairment, or treatment side effect profile. If you have had a conversation with me about cancer or heard a talk I have delivered within the past several weeks, you know that I emphasize that patients learn to tell their own stories to identify what is most important to them to protect as integral pieces of their quality of life and that medical professionals learn story telling to better inform patients on the patient’s terms, not the physician’s.

 

Public-facing #scicomm is not (only) about sharpening the scientist’s skills as expert communicator; it is not (only) about proving the worth of science writ large, or a specific domain of research within the broader sciences, it is not (only) to help the broad public constituency rally to disallow the disastrous cuts to science funding and frightening censure of science-driven federal administrations such as the EPA; no, the aims of #scicomm are to spark interest from our children, to empower people to seek deep mysteries of the natural world through embracing inquiry; most importantly, through my lens, #scicomm enables patients to become better informed about the nature of their diseases and mechanisms of their available therapies. In so doing, patients improve the quality and prolong the length of their lives. Next, they begin framing their own narratives to lift up the importance of science communication and motivate others to embrace inquiry and uncover the deep mysteries of the natural world.

Respectfully yours, Adam, CPT

[Note: If you are interested in hearing Adam deliver a public lecture on these themes and others, please join him for a public lecture hosted by the Religious Studies Department of IUPUI on the evening of April 19, 2017, 4:00pm. Light refreshments to be served beginning at 4:00pm. Lecture from 4:30pm-5:30pm. Topic: Well Wishes and Folks Theology: Religion in Interpreting Disease. The event to be held in room 409 of the IUPUI Campus Center located at 420 University Boulevard Indianapolis, IN 46202. For more information and to RSVP please click to open the Facebook event page.]

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/

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.