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.

Health as Resistance

We had been brought up to notice, to take “life as it is” and turn it on the spindle of compassionate action to make it more like “life as it should be.” This is resistance (Shem, 2002, p. 934).

When short term goals of care were achieved, I was discharged by my inpatient physical therapist, with a referral to continue therapy in an outpatient setting. During a month-long hospital stay, I graduated from a wheelchair to a walker; in fact, my first mode of transportation following brain surgery was a wheelchair equipped with a plastic tray to hold my weak left arm to prevent my hand from falling limp onto the spinning spokes of the wheels while clinicians transported me from my room to the cafeteria or the therapy gym.

Slowly but steadily I practiced shuffle steps between the parallel bars in the gym, using my hands for balance and added support. Then with a bulky knee brace to prevent my leg from hyperextending, risking damage to my knee, I scooted along with a walker. Finally, I was discharged with a cane to build up my mobility over time but instructed to use a walker around the house and use my wheelchair outside of the home.

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Adam and his inpatient physical therapist practice walking, June 2016

Assistive devices are often associated with a decline in function and independence, but for me, walking only with the use of a cane was an achievement. Now, I cast my cane aside when playing outdoors with our boys, but summed up recently by Whitney when I jogged several paces, “well that was awkward.” Not to mention the last time I attempted to walk our energetic two year old, 55lb dog, he brought me to the ground. “Are you OK?!” A nearby neighbor shouted. “Yes, I usually have a cane…” I began, but I let the words fizzle out after realizing the explanation for a fit-looking mid-30s year old taken down by a happy dog required more than just “I usually have a cane.” I waved off the concerned neighbor and struggled to my feet.

See, there is life “as it is” and life “as it should be,” observes Samuel Shem, the pseudonym for doctor and author Stephen Bergman, whose 1978 cult classic House of God, describing the brutality of medical residency, continues to be a must-read for medical students. The book, following a class of young doctors beginning their art and practice of medicine, exposes the reader to the horrors of the healthcare system, but Bergman does so with dark humor. In a 2002 article, “Fiction as Resistance,” from which the epigraph for this post is taken, Bergman shares more about his commitment to fiction as a guide to understanding.

As it is, or as it was in the summer of 2016, I celebrated when I was able to transfer to the toilet without assistance, and how it should be, the recovery of my agency and independence to use the toilet on my own, and also, bathe, dress, and tie my shoes became my act of resistance to the locked brain trauma unit that was my home during this time of partial recovery. The content of my journals during this time serves as the foundation of this blog, but more than share my stories with others, my writing is (was) also my guide to understanding. Fact can be stranger than fiction, and Shem (Bergman) and I have at least one thing in common: our tools for examining the world are pen and paper.

“Other than my brain cancer,” I joke, “I’m in pretty good shape.”

As it is, I confront my health every day. Will I have a terrible headache? Do I have the familiar seizure onset symptoms, or “aura”? Does my left foot tremor when I set it down to take a step, signaling that fatigue will be problem? Does my head float, seemingly detached from my body?

I wrote a blog post recently addressing the “you might as well” sentiment: you have brain cancer, have some ice cream, you might as well. In that post I resisted the idea that serious illness affords an anything goes attitude. Paradoxically, perhaps, I suggest that the opposite is true: serious illness demands more rigor and discipline.

I rewrite my to-do list weekly, and I am happy to report, that list continues to fill with conferences, speaking, invited guest blog posts, and advocacy events. There is so much I have yet to accomplish: the book that is sitting incomplete on my laptop’s desktop, the three draft academic philosophy papers that need a little more attention before they are ready for submission, and the reformatting of my CV to seek more opportunities to tell my story.

My boys deserve the most able bodied dad they can get before his body falters and fails. Whitney deserves the maintenance of my health for as long as I can sustain before her spouse and care partner roles continue to bleed together.

What if the most punk rock thing I can do is get a good night’s sleep? What if rebellion in the face of illness is to decrease or eliminate those extra glasses of wine? What if my greatest act of resistance to terrible disease is prioritizing health?

Health, as resistance.

What if that’s how I take life as it is and make it more life as it should be? What compassionate actions might you take? What gap between “is” and “should be” will you close? What is your greatest act of resistance?


Shem, S. (2002). Fiction as resistance. Annals of Internal Medicine, 137(11), 934-937.

The sick role

Last week Whitney and I launched a GoFundMe campaign, and we published our needs to the community with this blog post. We reached our goal within hours of the post, and in the following days, we doubled our goal. We are incredibly thankful for the amazing community that continues to support us, now in our third year facing brain cancer. We received generous contributions from all areas of our lives! The Facebook community of friends and family shared our campaign almost 60 times! On Twitter, the home of my academic networking, many of our followers retweeted the blog post and contributed. On LinkedIn, despite it being the social platform where I am least engaged, we managed to drum up support after a friend and healthcare professional shared the blog post, calling it a “must read.” For the generosity and social awareness, thank you does not adequately express the months, if not years, of easier breathing our family will experience after your selfless giving. Thank you.

 

I am most humbled by the fellow patients, care partners, and widowed members of our community who left comments and shared posts explaining that our family’s financial struggles, though painful and contextualized to our circumstance, are nevertheless common to nearly everyone facing serious illness and advanced cancer. When I manage to capture in writing the experience shared by so many others, I am reminded of my strengths and the privilege I have to raise my voice. The call was to help us financially, and we thank you for that, yet what I carry with me are the thanks offered by others for explaining financial toxicity in an accessible way.

 

In the 1950s a sociologist named Talcott Parsons described a concept he called the “sick role.” According to Parsons, people who are ill have both rights and responsibilities. The rights are to protect the dismissal from normal functions in society, while the responsibilities of the ill are to partner with healthcare professionals in an effort to get well.

 

Illness is a social deviance, according to Parsons. Deviant because the seriously ill are no longer meeting the expectations of their assigned social roles. And so while not responsible for their illness–not blameworthy for illness–the seriously ill operate under an umbrella of sanctioned deviance. Deviance that is policed.

 

I was discharged from the hospital after deemed medically stable after brain surgery. I was transferred to an inpatient acute rehab facility, where I started in a wheelchair. I was discharged from the inpatient facility able to walk with the use of assistive devices. While inpatient, my bed and wheelchair were outfitted with alarms that would alert staff if I tried to get up or transfer on my own. I rang the call button if I had to use the toilet. For weeks I had someone standing with me in the bathroom. Policed deviance.

 

These days, I work part-time, but I report my earnings every month to two different agencies. I undergo medical review annually. We submitted a “doctor’s note” to lobby the school transportation office to allow a bus stop in front of our home so I would not need to navigate potential weather conditions to walk the several houses to the assigned bus stop. I am offered the occasional honorarium (a one time payment) for speaking in conference settings, but rather than thank the organizers and take pride in my work, I complete paperwork to account for my earnings.

 

This is policed deviance. This is the sick role, some sixty years after Parsons introduced the concept.

 

Our algorithms saturate social media feeds with targeted advertisements, but our health and insurance systems are unable (or unwilling) to take readily available data, such as the nationally standardized diagnosis codes (ICD-10) to drive decision-making logic that, for example, excludes people with terminal illness from medical review.

 

I answered a call from my long term disability provider just this week with the question prompt, “What more support do you need from us to get you back to full-time hours?”

 

Curing my brain cancer would be a good start.

 

I conclude this post with where I began: Thank you for the generous outpouring of support you showed our family these past two weeks. We are profoundly impacted by your generosity, and all of us are enjoying a better, more peaceful home life as a result of your giving. We stand a chance now of actually getting back on our own two feet–or two feet and a cane, whatever. Our kids continue their activities. Whitney may be able to step away from the several “pick up days” she takes at work. Thank you, thank you.

 

Still, there is the nagging reality that our deviance is sanctioned, our freedom is policed, and so beyond the existential threat of serious illness, there is the threat of regulatory authority that could take away our protections at any time. That threat may only be met through civil, honest dialogue, and a commitment toward protecting the rights of others. But rather than view people with illness as deviants who must be policed in their dismissal of social roles, how might we lift up the experiences of the seriously ill to teach us all something about humanity? About how to live each day? About insurance and healthcare and what “work” is rewarded. How might we elevate serious illness rather than police it?

 

We have more work to do.

You Might as Well

“Go home and eat some ice cream …you might as well.”

This advice was given by a doctor who cared for me during a phase of the “standard of care” protocol. This statement reflects a familiar theme for those of us with serious illness, specifically, a haphazard, anything goes attitude toward self care. There are at least two reasons for this: first, most physicians are trained within the rigid medical school curriculum that is shaped by the ‘biomedical model.’ Do not be intimidated by the phrase: biomedical. What it refers to is the Western tradition of medicine especially over the past couple hundred years, beginning with the germ theory of disease, then the discovery of the structure of DNA, and now dominated by genomic sequencing. The guiding thesis is that biomarkers and lab work reveal all, or at least most, of what clinicians need to know to diagnose and treat diseases. In other words, there is not much to do ‘personally’ beyond what the treatment protocols call for clinically.

The role of nutrition in cancer care is unknown, other than burgeoning evidence linking fiber intake to improved outcomes following the diagnosis of colorectal cancer, and studies attempting to correlate consumption of red meat and processed foods to cancer risk. There is not (yet) a decisive trial arguing for any therapeutic efficacy or improved clinical outcome tied to diet.

Second, following the deterministic ideal from biomedecine, that diseases are governed by microscopic physical laws, and that what matters to care is what happens in the clinic, health outcomes and prognosis follow a disease trajectory that is well established through population-wide statistics. Because the outcomes for my serious illness are grim and options for curative therapies are limited, the take on self-care is “anything goes.” Go eat some ice cream. You might as well.

This post is not about ice cream. Rather, this post is about the attitude. Anything goes.

The problem with this attitude is that if anything goes–if everything is permissible–than nothing matters. If nothing matters, it is easy to become disenfranchised. If nothing matters, we lose grip on our “agency,” or feelings of control. When feeling out of control, our mental health suffers. We believe things like, “you might as well.”

The anything goes attitude is especially damaging when we peer through the lens of nutrition: choosing what to eat, when to eat is an exercise in self control. Amidst the uncertainty of serious illness, when threats to our agency loom large, patients may express their control through diet. In the absence of clinical data to argue for (or against) nutritional solutions for cancer, clinicians are often silent. Meanwhile patients ask their peers what diet others are following. No doubt patients are interested in enhancing and extending their lives and so are interested in the potential outcomes associated with diet, but more so, I think patients are desperate to compare their experiences, share what decisions each other is making on their own, and validate their choices through peer support. The anything goes mindset undermines what patients seek: agency, control, and support. When these pillars are chipped away, our health suffers.

You might as well eat what you want.

You might as well have a few drinks.

You might as well charge that to credit; take shortcuts on the job; skip the difficult conversation; give up on that goal you set for yourself; stop going to the gym; do not fix the strained relationship with your family; just do what you want. You might as well.

When diagnosed with a serious illness it is very, very easy to slip into the anything goes mode. When we are in the middle of it, recovering from surgery, nauseated by chemo, weak from fatigue, in short, when we are in the shit, it is easy to believe that we *deserve* to treat ourselves. That our compensation for getting blindsided by a life-limiting or chronic illness is to eat the ice cream.

I agree that serious illness carries a privilege. Yes. A privilege. And I think further that serious illness does license an attitude to seek more enjoyment in the good moments and savor our time with family and friends. Even to, sure, go home and eat some ice cream, but not because anything goes; instead, because well being is possible within serious illness, and that is something we discover for ourselves by living life, not through microscopes or biomarkers–not that these are not integral tools to practice medicine–but because health and illness are bigger than medicine.

We are privileged to confront mortality in a robust and meaningful way; in a way that opens new vistas; in a way that we might serve as a beacon to others to live a life seeking wellbeing. We are privileged to learn the intimate secrets of life. So tell your story. Enjoy living. You might as well.

 

What We Gain Through Shared Language

And he’s on the table and gone to code/ And I do not think that anyone knows/ What they’re doing here” -“Jumper,” Third Eye Blind

 

My mom delivered me in a hospital with no staff anesthesiologist, and her care was provided by a general practitioner, not an OB. The story goes that when the doctor asked what my name would be, “Adam,” the doctor repeated a “poem” he knew called,”Fleas”: “Adam had ’em.” That was Putnam County Hospital.

 

I was raised in Arizona for many important developmental years, from four years old until 12. A pastor’s kid (“PK”). After some time in Phoenix, our family moved to a small rental home in an affluent Scottsdale community, near the new church build my dad was  leading, with tremendous support from mom. I was never much struck by this disparity between our 1,500 square feet and our neighbors’ 3,000. The road to hell may be paved with good intentions, but the road to wealth is not by ordination.

 

My childhood best friend owned lazer tag vests, guns, and even the LT base. He had a Commodore 64 and Nintendo. So long as I managed to be a good friend and an entertaining guest, there wasn’t much need for me to have those things, too. (There’s something of neoliberalism to speak to here, but I’m not a political scientist.)

 

We moved back home to Indiana in the middle of my sixth grade year. That was a tough move.

 

In 1996, I started high school. I was too young to catch Nirvana’s Nevermind a few years earlier. Girls were using pencil erasers to create negative space on the covers of their Mead notebooks in the form of the flying W, representing Weezer, and Green Day would be my bus companion on the way home–where my route would take me by Whitney’s house (my now wife), but we were only passing acquaintances then. Besides, she had an older brother with a car.

 

I was bullied on that bus. I started skateboarding home. Skating traded in emotional bruises for physical.

 

By 1996 my Green Day interest fueled a deeper dive into whatever punk rock was accessible in the Midwest: Rancid, Anti-Flag, NOFX, and the skate punk, Lagwagon, Pennywise, the Descendants, and Screeching Weasel.

 

In 1998, many of us fell for Third Eye Blind. “Jumper” was one of those radio singles that, along with tracks from Foo Fighters, seemed to transcend high school niche communities.

 

This morning I washed breakfast dishes, and without prompting, I started singing, “I wish you would step back from that ledge, my friend.” Isaac, perceptive, always listening, was strolling around humming and piecing those words together. I called him over, and we listened to a few 3eb tracks. Throughout life we wrap ourselves in lies to our own detriment (“Cut ties, with all the lies, that we’ve been living in.”) This is poignantly so in high school, and so the lyrics of that song unified an adolescent spirit.

 

***

I am active in medical eduction (#MedEd), on the periphery, anyway. I promote medical humanities, narrative medicine, or empathetic witnessing–there isn’t enough scholarship available yet to draw clear boundaries around sub-specialties, and this is probably good.

 

Being a patient advocate is an uphill road. There are receptive institutions, and receptivity increases more each lecture and conference, but fighting imposter syndrome is a struggle–what right do I have to teach these doctors? A senior resident has nearly a decade combined of undergraduate pre-med and med school training, not to mention 24 hour rotations through major departments, running codes, delivering babies, identifying pill-seeking behaviors, establishing relationships with patients while maintaining objective distance, and coming up with poems about newborns.

 

I have had glioblastoma for 22months. What right do I have to give a Grand Rounds? (Note: I haven’t given a Grand Rounds, so someone invite me!) I reflected with a friend recently on my strategy to engage a clinical audience. I talked about how hard I work to cultivate a medical vocabulary: to translate my experience into the physician’s vernacular. When discussing my diagnosis, I emphasize “histologic vs molecular pathology and classification of tumors.” I do not adjust my medications, I “engage in monitoring and medication self-titration.” I only rarely talk about “scans,” instead, “diagnostic imaging.”

 

The idea is this: to gain credibility in the healthcare space, I demonstrate my aptitude with jargon to earn my seat at your table. This is not only the patient’s burden, medical hierarchy itself is a power structure, where those with training, experience, and knowledge sit atop those with lesser of these.

 

The error I commit when accepting the encumbrance of fitting my language to yours is that we are somehow peers, and I must demonstrate thus to be respected, and only those who earn respect are listened to. That may be a problem of the dominator hierarchy rife in medicine, but, and I’m now coming to realize, this isn’t my problem to solve. Indeed, it is not a problem by which I am directly impacted, medical miscommunication and poor handling of complex cases, notwithstanding.

 

Stakeholders in a diverse project with shared aims need not be peers to be colleagues.

 

I do not speak the language of medicine. I speak the language of humanities. When the doctor in training was dissecting cadavers, I was reconstructing medieval arguments for god’s existence. Starkly contrasting research, one would think, but when viewed like this, mapping the body (med students) and understanding what our greatest thinkers have claimed about the purported deity that ostensibly designed it thus (philosophy students), the lines are blurred.

 

I aim to be competent in the language of medicine, but no longer to earn the respect of my practitioner audience, but to best understand the disease that plagues my body. The practitioner audience may learn my language, too, not to publish papers in professional philosophy, but to best understand the life-world of people under their care.

 

Doctors, we are not peers, but that does not entail we are not colleagues. We, each of us, seek to improve the lives of others, and in that pursuit, we have many shared aims. That is what we gain through shared language. Let’s move forward together, as colleagues. It takes expertise on both ends of the stethoscope to chart our future path.

 

After all, “Everyone has got a reason to put the past away.”

 

No Convincing Evidence: An MRI Story

I have endured 14 or 15 MRIs in these past 15 or 16 months. That is quite a few. I worry about side effects of prolonged exposure to the contrast agent gadolinium, which is injected by IV at each MRI. For that matter, I worry about my IV blowing a vein when the gadolinium is “pushed”! I worry that I’ve forgotten a metal artifact in my pants or shirt pocket that will be ripped from my clothing and ricochet around the tube like an errant bullet. (I think there was an episode of House about that.) I worry that I’ll nod off 30 minutes into the scan, jolt awake, and have to restart the sequence of images for failure to hold still enough. (There was also that one functional MRI scan that required motor and language tasks to be performed while the images were captured, and I felt very nearly brainwashed, but I only say that for dramatics.)

But most of all, I worry that this will be the scan to reveal new tumor growth or recurrence. Everything you read about glioblastoma includes some version of the description, “aggressive, deadly, poor prognosis, incurable.” My neuro-oncologist told me, “it is very unlikely that you will not have recurrence.” Another doctor (whose name and title remain nameless) took the breaking of bad news a step further when he told me and my wife during an office visit, “you know you’re going to die from this, don’t you?”

This week I had an MRI scan on Monday, my every-eight-week immersion into the tube, and today, I want to spend a little time writing about the process of undergoing monitoring for chronic and advanced illnesses. People often say to persons with chronic illness to, “keep a positive attitude,” and it turns out this is excellent advice, but our loved ones who speak these words have little in mind of the experience the person with illness is enduring. I hope to offer insight into the obstacles for keeping up a positive attitude.

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Radiology Report from my scan on August 28, 2017; 15 months post-diagnosis.

The term “scanxiety” is fairly well known around the cancer community. The term speaks to the feelings of anxiety, depression, fear, and stress surrounding an upcoming scan or test to monitor disease progression. Scanxiety may set in days before a scan and may stick around for a few days following. What is problematic about this feeling is its seeming contradictory nature in the face of the general public’s attitude toward disease. Diseases are to be “beat,” we are “cancer warriors,” we will take on our disease and, “kick it’s ass,” because, “you got this.” Our friends, family, coworkers, sometimes medical team, and many other acquaintances want to cheer us on like we’re marching off to war–hell, President Nixon declared it a “War on Cancer” when he authorized expanded budget and autonomy for the National Cancer Institute (NCI) in 1970.

In an MRI machine a patient lay motionless, often in scrubs, under the oppressive sounds of the giant magnet, if a head MRI you’ll be latched into an immobilization mask, and typically an IV is placed in one of your arms. You take deep breaths. You feel very much out of control of the circumstance, of your own body, and of the disease that grips you. This is scanxiety. Yet, when you checked into the imaging facility on Facebook your friends all said, “you got this!”

I feel anxiety, and its origin is not only the scan itself, but it is my deep sense of fear and sadness juxtaposed against people’s calling on me to fight, to battle, to kick its ass, to be brave, and don’t worry, because “prayers up.” In an effort to be encouraging to our loved ones we launch a barrage of empty platitudes and weak analogies.

This is scanxiety.

The eight week countdown to the scan is wait enough, but there is plenty more waiting to be found. Because of health care restrictions my imaging facility and neuro oncologist are affiliated with separate institutions. Following my scan I submit for a disc to be created, which can be picked up 24 hours following my scan. I then take the disc to my oncologist’s office, and wait either for a call or for my office visit the following week. My only glance at results following the scan is the radiology report you see pictured above, which is typically posted three to four days after the MRI.

Standard language appears on this report, including the imaging techniques and “signals,” e.g. T1, T2, FLAIR, etc., and you’ll also notice standard diagnosis language, “malignant neoplasm of parietal lobe,” and procedural terms, “resection,” and anatomical identifiers, “posterior right parietal lobe.” Each of these are vitally important for the language of medicine in our fee for service, reimbursement-driven culture of American healthcare. See, my diagnosis is coded with a unique identifier from the International Classification of Diseases, in its 10th edition (ICD-10), and this code allows for certain procedures, also coded with unique identifiers from, for example, the Current Procedural Terminology (CPT) code set. My healthcare providers are only reimbursed for CPT codes allowed under certain rules associated with my ICD-10 code.

I share this with you to help folks understand how deeply entrenched our coding and classification systems are to report on the experience of a patient living with illness within our current healthcare system. Because my medical team resides within different institutions, I know that when a specialist writes an order for me  that will cross these institutional boundaries, I need to check for accuracy in my name, date of birth, insurance details, maybe my medical record number, usually my diagnosis code, and so on. Each of these logistical details are also held in mind when showing up for a scan. My MRIs run about $5,000 each, every two months, so it’s the best interest of my family that we’ve crossed our t’s with insurance.

What is not standard in this report is the language used by the radiologist who reads the scan and prepares the radiology report. I was motivated to write this blog post today because of the particularly nuanced language appearing in the “Impression” of the report: “…without convincing evidence of progression.” When reporting these results to a friend I said, “[this conclusion] is a respectfully conservative claim I like as a philosopher, but not necessarily the certainty I’d like as a person with brain cancer.”

 

We tell our loved ones living with chronic and advanced illness to keep a positive attitude. This advice is good for us all, yes? Life is that much better when we approach it day to day with light heartedness, care and concern for others, a sense of humor, and yes, above all, “a positive attitude.” As you help friends and family navigate the challenges of illness, especially advanced or chronic illness, remember that often the symptoms of disease are second-place to our worry, anxiety, stress, and depression. My best news this week is not that my cancer has not grown any more, but it’s that there is no convincing evidence to conclude that it had. This is humbling and worrisome, but it is also liberating to free myself from the pursuit of certainty I may never attain, and so I have learned to be happy with evidence that is at best only indicative.

Measuring Outcomes: What the Newly Diagnosed Should Know

I open this post by offering key definitions that are helpful to anyone impacted by a cancer diagnosis, directly or indirectly, which speaks to nearly half of the population of the United States. Indeed, “Approximately 38.5 percent of men and women will be diagnosed with cancer of any site at some point during their lifetime” (reference). I explain the standard metrics for monitoring cancer response to treatment, and I discuss the role of these metrics in determining the standard of care protocol. I conclude with a discussion of the cancer experience that is not so easily quantified, or captured by the established metrics. My aim is that in this article, persons relatively new to the cancer experience may find tools to better equip their journey. The National Cancer Institute (NCI) offers a similar resource on understanding cancer prognosis (here).

 

Standards of care for treating cancer—that is, the established “protocols” for how, when, in what sequence, and guidelines for determining dosage, vary by cancer type, yet for at least 50 years, the general cancer treatment program is colorfully, if not cynically, called “slash and burn,” referring to the twin procedures of surgery and radiation therapy. Or, “slash, burn, and poison,” when cytotoxic (cell-killing) chemotherapy agents are ordered following surgery and radiation. The new era of “precision medicine,” which employs highly specialized treatments engineered to target the biological characteristics of a person’s cancer, promises to discard this primitive slash, burn, and poison program, but to date, hugely successful outcomes that result from targeted therapies in trial for quite specific cancers have failed to be borne out clinically in the general cancer patient population. In short, for all the hype of precision medicine, day-to-day treatment protocols across the country maintain the status quo.

 

The aim of any treatment protocol is to offer the therapy, singularly or in combination with others, that is most likely to produce the greatest degree of therapeutic efficacy, or “disease response.” Therapeutic efficacy, disease response, is measured with sophisticated diagnostic imaging tools such as MRI, CT, or PET scans. The overarching therapy effectiveness metric for cancer types is quantified by median overall survival (OS), meaning the time after diagnosis when half the measured population has died and the other half is still living. Median progression free survival (PFS) offers a similar metric quantifying the time following diagnosis that half the population has experienced disease growth or recurrence and the other half has not. Take my case, glioblastoma, with a median OS of roughly 15 months (reference). This indicates that 15 months following diagnosis, half of the diagnosed population is no longer living, and half of the population is continuing to live. My current time since diagnosis is today (August, 2017), 15 months out, meaning statistically, half of those who were diagnosed around the same time I was have since passed away. Some died very quickly after diagnosis, and others will live three, four, five, sometimes six or eight years longer. Of course I aim to be included in those outliers showing long-term survival of five or more years.

 

Protocols are tested against current standards of care, typically in randomized control trials, to measure OS and PFS against the current medians for the standard of care. Regulatory bodies, the Food and Drug Administration (FDA) for example, approve drugs, devices, and procedures, when those therapies increases either OS or PFS for the trial population above the current standard of care, without an intolerable side effect profile, or increased toxicity. Trial therapies that perform better than current standards, or when no current standard is established, have a likely chance to be approved. Sustained improvement in key metrics over time, reported in longevity studies, meaning spanning long time frames, or meta-analyses, meaning spanning large and diverse populations, may lead to a revision or new standard of care for a cancer type that is treated by the newly approved therapy.

 

In short, the standard of care is established for umbrella categories of cancer types based on measuring the same key metrics across large populations over a long period of time. Those therapies, or combination of therapies, that maximize OS and PFS, while mitigating toxicity are selected as the ongoing standard of care.

 

The politics of drug discovery and approval involve governmental regulatory agencies, multi-billion dollar pharmaceutical industries, and culturally embedded research paradigms. That is all too much to thoughtfully discuss in this article. I will say only this: reimbursement drives the systemic treatment of cancer. Standard of care therapies are typically covered by health insurers, but many experimental treatments or so-called “off-label drugs,” that is, drugs approved in the treatment of one disease that show promise for treating other diseases but are not yet proven in randomized control trials, often are not covered by insurance. Relatedly, the genomic sequencing that is required to determine the appropriate “precision medicine” to target a person’s specific cancer variant is currently not covered by the majority of health insurers.

 

Standard of care offers patients the protocol with the statistically demonstrated best shot at long-term survival. Standard of care is also the protocol commonly covered by insurance. On its face, this is a good thing that insurance covers the standard of care for a disease, but there is at least one downside. This schema ties patient treatment options to governmental budgeting priorities and big money lobbyists. In a purely hypothesized scenario, but not one divorced from reality, if a lawmaker hears from her lobbyist from big pharma that disease X is well controlled with approved treatment Y, then the prospect to increase funding to the National Institutes of Health (NIH) may appear less pressing to the lawmaker who sees little reason to pay the big price tag of experimental research, when the lobbyist is showing their company’s success rates. This introduces a feedback loop where the government fails to fund research, insurance companies have little reason to reimburse experimental therapies, and patients are offered fewer options to explore cutting edge therapies. It is for these reasons that I advocate for increased research funding for the NIH, its subsidiary arm, the NCI, and not-for-profits, like the National Brain Tumor Society (NBTS) who equip persons affected by brain tumors to raise their voices to lawmakers who may only be hearing one side of the experimental research budgeting issue.

 

Taking stock, so far I have roughly defined key metrics put in service to monitor the effectiveness of our treatment protocols, I have explained how these metrics are used to revise standards of care, and I have revealed one issue with our reimbursement-driven healthcare system, namely, that it serves as a barrier to funding trial research. Now, I turn my attention to the experience of illness—something not easily reported by standardized metrics. To resolve this issue, patients must learn to tell their stories! The fields of medicine and pharmaceuticals are becoming more interested in something called patient reported outcomes (PRO). These PRO metrics speak to the quality of life impact given a selected treatment protocol, but constructing a narrative, with the support of friends, family, and trusted clinical practitioners, is the best way for a patient to share their experience with lawmakers and medical teams to serve as a catalyst for change—whether the change is to ask congress for budgeting priorities or frame a conversation with a patient’s clinical specialist.

 

Harnessing the power of story telling can also be a powerful tool to communicate with loved ones who struggle to know how best to respond to the illness experience.

 

I disengaged my friend group at each of three milestones in my life: first, when I started grad school, I lost friends to my study commitments; I picked up an evening job in the service industry to help care for my kids during the day, attend class in the afternoon, and bartend for income at night. Second, when my wife and I grew our family by having kids, my friends were mostly grad students and bartenders, not the most family-friendly groups, and adjusting to family life created a rift in some of these relationships; third, when I was diagnosed with aggressive and incurable brain cancer.

 

I cancel on friends often: dinner plans, concerts, hanging out to catch the Cubbies play, I cancel these plans all the time. Sometimes because I am fatigued, sometimes because I know the environment will trigger a focal seizure, or at least bring on seizure-like symptoms: left-sided numbness, light-headedness, dizziness, and headache, or for what has been the case recently, I cancel because I just want to be home, with my wife and kids nearby. Brain cancer has dynamically changed my relationship with my wife. The emotional burden we carry cannot be overstated. The metrics, the open trials, morning email bulletins from medical news outlets all twist and turn their way through my mind each day. My wife works hard in a trauma hospital to support our family, to be the only driver in our home to get each of us in our family of five to where we need to be, to carry our family’s medical benefits, and she manages our monthly budget. She and I are both exhausted. She needs more sleep than she gets. I need support from friends who understand, but with a disease incidence rate of three in 100,000 and only 5% of the diagnosed population living five years, it is difficult to find a friend locally who shares my diagnosis, and among my non-cancer friends, it is tough to find one who not only listens, but who understands. I look for emotional support from my wife, which places yet more burden on my care partner to fulfill multiple roles in my life.

 

I read, write, and research daily, fearing that I must approach my “work”—blogging, public speaking, working on a manuscript, with urgency because the course of my disease, or the effects of the treatments to control the disease, in time will negatively impact my higher level cognitive functioning. Here I am, a head full of medical knowledge, self-imposed restrictions on having pizza and beer, pretty disengaged from new music, sports news, and pop culture, and never much wanting to do anything other than do each day only those things that contribute to the big goals I set out for myself before I reach my dot on the overall survival normalization curve.

 

Practicing how we construct our stories to communicate these emotions, decisions, and reactions in a way to inform our friends and family and not alienate them is an acquired skill that will take each person impacted by a cancer diagnosis, directly or indirectly, some time to cultivate. It is my hope that equipped with the language in this article, and the glimpse into my personal experience, you may find your attention to these issues more focused.