Author: Adam Hayden

Unfinished but timely: on the patient perspective

Note: I wrote this post yesterday after reading the article mentioned in what follows. I did not publish. I wanted to return, edit, clean up, ensure my case was compelling.

Instead.

I missed a window of opportunity to strike while the iron was hot, as it were. Tonight Medium ran this response from @cancergeek to the piece I critique. I realize my timely response is preferable to an edited and polished version.

I hope you’ll appreciate this raw, unfinished draft for the value it offers from my perspective–the patient perspective.

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I note a growing body of literature that advances the revision of medical practice in light of a personal illness experience. Scrolling the opinion and editorial pages of the New York Times, STAT News, NPR, The Atlantic, and many more outlets reveals emergency medicine physicians, surgeons, hospitalists, and so forth describing their clinical lives prior to an illness experience, followed by a narrative reconstruction of that experience, leading ultimately to a cathartic synthesis, “if only I had known then, what I’ve manage to learn now…”

On its face these are all together helpful and instructive narratives! Each of us is privileged to learn from our experiences–physicians and anyone else. Obviously, we are all vulnerable to illness; hence, these narratives stand to benefit each of us. Besides, it would be fundamentally antithetical to medical research to imagine that our knowledge of medicine is somehow complete, or extensive enough, that lessons no longer lie prone at every turn. Indeed, it is a strength of the research and clinical communities to admit fallibility and openness to change; traits which are to be honored, taught, and practiced.

OK, this all sounds good, but to start that paragraph, I said, “on its face,” what gives!?

Each evening before bed, I return to four or five articles that I have opened in browser windows on my phone from daily email roundups, Twitter, Facebook shares, etc. Typically these are healthcare policy editorials, new medical research releases, or, no surprise, medical narratives like those that I described to you.

Last night I focused attention on this piece from NPR’s medical news service, Shots, carrying the compelling (if not click-bait) title, “Brush with death leads doctor to focus on patient perspective.” With apologies to NPR, I’ll pick on this article. I cannot imagine that the doctor was oblivious to the “patient perspective” prior to their “brush with death.” I’ll concede that what is meant by the headline is to suggest a reorientation of priorities following a traumatic experience (and titles/headlines are an editorial call), but let’s be fair to the subject of the article and not gesture toward the idea that only by way of trauma might this clinician be brought to focus on the patient perspective. That strikes me as uncharitable.

More robustly, both as a response to editorial teams generally, and to those attuned to this physician-turned-patient narrative genre, particularly, I continue to implore you to tap into the patient community not only for one-in-a-million illness recovery/survivorship stories, and make-a-wish feel good coverage, but to earnestly derive action-oriented critiques of the American healthcare system. The physician-turned-patient narrative offers great utility because it carries both credibility and a familiarity of the system that is critiqued. There is an inbuilt plot twist because the doctor learns through role reversal. Yet these narratives always lead with a clinical orientation and so are inherently scope-limited.

The patient community also carries intimate knowledge of the healthcare system, policies, protocols, and knowledge of disease and symptom management. We are expert communicators of the healthcare system because we field telephone calls and visits from family, friends, and coworkers.

NPR reports these words from the brush-with-death clinician:

“To listen to our patients with a generous ear does require a willingness to relinquish control of the narrative […] Our questions allow for the possibility that we do not already know the answers. By not dominating the flow of information, we allow the actual history to emerge.”

Let’s follow doctor’s orders! Extend a generous ear to our patients who are navigating our healthcare system, interacting with clinicians, thinking, feeling, and living our diseases. If role reversals and plot twists portray the physician as coming down from on high to learn from the patient perspective. Let us also encourage our patients to reconstruct their experiences that they may be lifted up to exercise the influence of a clinician.

I am an author informed by disease. Physicians, patients, we all have lessons to learn and stories to tell. We may bring to light a path forward for both physicians and patients that we may travel together as we recognize our shared humanity found in close proximity to the practice of medicine.

Paying It Forward at Thanksgiving

Jack Hope and I share many interests, not least of which is a mutual love of well-crafted cocktails, which sets up the story, how Jack and I became friends. I tended the bar at Libertine, learning from and working beside some of our industry’s best. Jack was a loyal, kind-hearted, thoughtful patron. If you know Jack, those words go down as smooth as our drinks. Jack is each of those things and more: kind-hearted, thoughtful, insightful, and compassionate. Talking across the bar one night, Jack and I learned that he and I are both graduates of the philosophy program at IU School of Liberal Arts at IUPUI.

My wife, Whitney, and I received my diagnosis of glioblastoma in June 2016. I coped with my devastating disease by turning to my first love, philosophy. I launched this blog, and I reached out to my academic contacts to express interest in sharing my story: the story of a young-30s, philosopher, bartender, dad to three, who is employing his formal training in academics to frame his aggressive brain cancer with some amount of sense–a task that at times continues to be Sisyphean.

I delivered my first public speaking event in March 2017. Jack attended, and by his own report, felt moved to action. He and I spoke. Keeping with Jack’s generous and kind nature, he wondered how his success in the small business space with Hope Plumbing might translate to meaningful support of me and my family. Whitney and I are the beneficiaries of a loving and supportive community. Our immediate needs for food, medical bills, and daily living were being helped along by our support network, and Jack realized he might be well positioned to exercise greater influence. This set in motion the first steps that would become the Adam Hayden Philosophy Scholarship at the IU School of Liberal Arts at IUPUI. Jack is the founder of this award, but he is always quick to recognize the generosity of his employees who gave 20% of the funds needed to endow the scholarship, his suppliers who generously gave, and leaders in the service industry who know me personally, or by reputation, as, all things considered, a pretty decent human being. Special thanks to Neal Brown of Stella, Libertine, Pizzology, Ukiyo, Moon Rabbit Ramen, Ed Sahm of Sahm’s Tavern, Big Lug, and more and William Kennedy of Crossroad Vintners.

Monday, November 13, just in time for Thanksgiving, Jack, philosophy faculty members from IU, the Dean of IU School of Liberal Arts at IUPUI, the Major Gifts Officer of the school, my parents, Whitney, and I presented Halle Leganza, philosophy student at IUPUI, with the inaugural award of the Adam Hayden Philosophy Scholarship.

I spoke with Halle to hear some about her philosophical interests, and in the common thread that connects all people featuring in this story, Halle uses philosophy and this scholarship she has earned to pay it forward in the world.

“I realized how much [philosophy] helps me in becoming more proficient at understanding meaning behind what we say and write,” Halle told me. Meaning is central to Halle’s professional interests. She seeks to be an American Sign Language (ASL) interpreter. Halle continued, “Philosophy specifically has taught me how one sentence can hold a variety of propositions and meanings, something we all as interpreting students struggle to pick out of utterances or signs.”

Halle’s insight is welcome. Consider how often we employ sarcasm, speaking the same words, but conveying a meaning that diverges from the words that are uttered. (Philosopher Paul Grice labels this phenomena ‘implicature.’) Halle credits philosophy with identifying, “the purpose of the sentence overall. What exactly is trying to be communicated here?” (her emphasis)

This year at Thanksgiving my family, despite this life changing and devastating diagnosis, has much to be thankful for.

I am thankful for so many in our community who gave selflessly to endow the Adam Hayden Philosophy Scholarship. You gave without knowing exactly who would benefit, and how exactly that beneficiary would leverage your generous donations. But look at the incredible work you have already contributed to! Halle will have a little less stress this year at school, and she has the benefit of a little more focus on her studies. Imagine ten or twenty years into the future when Halle is facilitating communication with persons who are deaf. You now have stake in her success.

Thank you, Jack. Thank you donors. Thank you IU School of Liberal Arts at IUPUI. Thank you Halle. Together we paying forward the generosity of others. Together we are making a positive difference in the world.

Cheers- AH

Pictures follow, also click to see a short video featuring Jack and I discussing the scholarship.

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Recipient Halle Leganza and Dean of IU Liberal Arts at IUPUI, Dr. Tom Davis

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Jack Hope, Whitney and Adam Hayden, Adam’s Parents, Marc and Julie Hayden, Halle Leganza, Dean, Dr. Tom Davis, Major Gifts Officer, Liz Goodfellow, and Philosophy Faculty, Dr. Chad Carmichael and Dr. Timothy Lyons

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Adam and Jack Hope, with Adam’s Good Friend and Mentor, Chef Neal Brown, Hosting a Fundraiser at Stella

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Founding Donor, Jack Hope with Adam

Measure What Matters

At the funeral, in the foyer of the church, amidst the sea of grieving strangers, herding their way into the receiving line, he said to me, “I wish my dad would hug me. I’m not sure he’s even said ‘I love you.’”

Don’t be misled; the funeral isn’t for his old man. Time remains to reconcile the regrets. To offer a hug and say, “I love you.”

I recall shoe gazing and nodding in furrowed-brow and puzzled empathy.

“I hug my kids,” I thought, two of them then, three now, “all the damned time.” Later that same day I was blowing raspberries on my middle’s exposed belly while those earlier words—“wish he’d hug me,” paced a groove in my mind. My boys likely wish I hugged a little less. I suspect their aversion will increase, with their ages, culminating with outright avoidance come middle school. The baby, though, “Little Adam,” he still goes for three big squeezes and a smooch at bedtime.

This is the stuff funerals are for, prioritizing, reflecting, like an off-cycle New Year’s resolution. We die so that the living can figure out what they’re supposed to be doing. I suppose this is why it’s uncomfortable to attend funerals.

A financial advisor, an acquaintance, posted to Facebook, “What counts as rich? Not rich with friends or family, but assets, holdings, a salary. I want a number,” the post concluded (my emphasis). Comments followed (though, not mine). The only sense in which I am rich is the former.

The problem, I suppose, with measuring wealth in relationships, is presupposed by the financial advisor: it is not quantitatively evaluable. What we measure is what matters. A quantity of relationships is not the desired end, otherwise Facebook would be good for us, instead, it is the quality we ought to measure, yet no quality scale exists for relationships.

It is evaluation that resonates with me. As a person living with an advanced illness, measurement and evaluation are central to my life. Occupational and physical therapists evaluate strength, balance, coordination, and range of motion, radiologists employ imaging protocols to measure changes in my brain that are indicative of disease response to treatment or progression, my neuro-oncologist evaluates the physical symptoms of disease, looking to maximize therapeutic efficacy and mitigate side effects. Ultimately my wife and I revise the probability of my continued survival given a set of variables informed by many of these inputs I described. In a technical sense, this is conditional probability. In real life, it is nail biting. Each time I cannot remember a name, forget a word, lose my balance, complain of light-headedness, or trip on the turned-up corner of the threshold rug is cause to scrutinize the event. Will we look back on this moment, as the first sign of my cognitive decline?

Folks like to say things like the following to comfort me—though I suspect it is more to comfort them, in the face of my seemingly random and devastating diagnosis, “I could get hit by a bus tomorrow. None of us know when we will die.”

Fair, but unless each time you cross the street you think to yourself, “Will this be the time that I am struck dead by a bus?” then you are drawing a false equivalency between the uncertain timelines for our passing. This sort of thinking, the sort of thinking where every misstep raises a flag, produces anxiety, and if you do not think so, here is a recent article published in STAT News (link) that reports one in five cancer patients develop PTSD within six months of their diagnosis.

The quantity and quality distinction is especially salient in these cases. Quantity of life is the lesser half of the diagnosis-prognosis relationship, that is, quantity of life, how long you live, is the deadbeat who “married up” to quality, yet quantity gets all the attention. As the financial advisor crudely stated in the Facebook post, “I want a number!”

Our chief metric for drug approval and the measurement the newly diagnosed latch onto is overall median survival. Indeed, I have appealed to this number several times to convey the seriousness of my diagnosis. Mainly to fire back at the “hit by a bus” crowd. I’ll think, “Sure, but is your bus coming in 15-18 months, with little braking and steering innovation in 20 years?”

I wonder lately, why the hit-by-a-bus crowd has been bothering me so much, and that thought is closely related to my reticence to openly share the (relatively) good news of a stable MRI scan. You’d have thought I would like to hit all the social media channels with news of a stable scan—stable meaning the areas of enhancement on the MRI images, indicative of tumor, are “stable,” have not progressed, when contrasted with the previous scan, eight weeks prior. If you follow me on social media, you recall I paraphrased the impression of my recent radiology report with the following words, “You aren’t better, you just aren’t worse.”

The truth of it is this: if I celebrate my good scans, if I hint that I am outliving the survival curve, then a culture that is steeped in quantity of life is placated, paying little mind to quality. We are a culture of whatever-it-takes life saving measures, poor advanced care planning, and doctors who view death as failure, thereby obstructing the end of life care that is of equal import to beginning of life care. I am a proponent of family planning, replete with a commitment to pro-choice policies, so too am I proponent of end of life planning, which includes thoughtful analysis, design, and implementation of policies, procedures, and protocols that prize patient and family choices in the end of life decision making process.

I am wealthy in my relationships. My kids won’t wonder about hugs. I am not rich in the numbers, but the immeasurable, the intangible, the quality of my life is on my mind. And my retort to the financial advisors: quality is priceless.

Science and Philosophy: Friend or Foe? A Guest Post at A Philosopher’s Take

Increasingly the lines are blurred between a strict empirical pursuit of experimental observation that is practiced in the laboratory, “on the bench,” as researchers say, and philosophical investigation of the world, “from the armchair,” which is an image of philosophy that draws criticism from some and raises the ire of many philosophers who see their work as more substantive than a priori reflection on topics detached from the natural world of experience.

Both portraits–the empirically-driven scientist and the armchair philosopher, are caricatures. Scientists adopt philosophical presuppositions that inform their experimental design to derive empirical data. Famously, Einstein’s moment of illumination on the path toward articulating his theory of special relativity was conceived by ‘thought experiment.’

There is a worry held by many contemporary philosophers that ‘scientism’ is on the rise, to the detriment of philosophy. Scientism is defined as unqualified deference to the empirical sciences as the only method by which a serious investigator pursues truth.

My attitude toward inquiry finds a seat at the table for both careful thought and careful experimentation. These are not mutually exclusive methods. I resist the idea that ‘scientism’ threatens philosophy, yet I also affirm that our philosophical positions should not wander so far from science that our philosophical theories become incompatible with evidence derived from the bench.

I recently wrote my first (of hopefully many) posts for the  public philosophy blog, A Philosopher’s Take. There I explore this issue of philosophy and the threat of scientism, and I ultimately argue that scientism is a non-threat to contemporary analytic philosophy. If you’ve found these brief paragraphs interesting, I hope you’ll click over to read my recent post.

Independence and Isolation

I gave up independence in the pre-op prep room, which feels very much like prison booking protocol, as it appears on cop dramas. A curtain is drawn but provides little in the way of privacy as busy nurses step in and out to place an IV, or ask for patient consent to treat. “We would like to save your tissue for research, if you consent to this, please sign here.” I undress and stuff my clothes–a hoodie, jeans, my sambas, into an evidence bag, well, not literally an evidence bag, but you know, it’s plastic, transparent, draw string at the top, your last name is scribbled on the bag like a Starbucks barista.

“Tall Flat White for Alan.”

“It’s Adam.”

“What?”

“Never mind.”

“May I use the restroom?”

“Sure, sweetie, it’s just down the hallway.”

I shuffle down the busy corridor, other patients peaking out from their curtains, I step into the bathroom across the hall from another pre-op room, I make eye contact with the patient and family in that room. We go under the knife soon, and we wait for our names to be called to finish the booking process. We sign our names on a photo copied, off center form, naming a healthcare representative.

“Just in case something should happen in the OR, this person is responsible for making medical decisions on your behalf.”

I glance at Whitney.

The die is cast.

The stripping of one’s independence leaves one with dependency. In this case, dependency on my wife, who, in that moment, became my caregiver, my power of attorney, and my named beneficiary. Our relationship will not return to the moments prior to my signing of that form, behind a loosely drawn curtain, gowned, exposed, needy, uncertain. This is no longer a relationship on equal footing.

We offer an oath, “In sickness and in health,” and this is an oath of loyalty, of commitment, “like the ring, a circle, that symbolizes love, with no beginning and with no end.” Yet, there is an end for each of us, and unlike the end many of us experience, my end will include slow and steady loss of executive function and my wife, fulfilling her role as caregiver, will be there to assist, and the impact this has on a marriage, even in times of health, is untold.

The arc of inpatient admission is to quickly strip a patient of their independence, to sanitize the handing over of autonomy to the medical professionals, then to methodically reconstruct independence until a patient is discharged. Days later the evidence bag is returned to you. Your hand tremors as you open the bag. You are changed from the person who wore the hoodie into the hospital at 5:00am on May 26, 2016.

The road to recovery is a prison walk with other patients and guards. The guards restrict your diet, your activities, and your visitors. The other patients are shackled with you, and regardless of our identities pre-booking, we are now bonded together, marching toward our release dates. Each of us pines for our independence. We dream of independence. We visualize freedom: to toilet in a private bathroom, to eat what we want, to pull the needles from our arms.

Independence will return me to my rightful place in the world.

But. It doesn’t.

Independence brings isolation.

Each Friday Whitney leaves for work around 6:30am, I dress the kids for their days, Isaac takes the bus to school, my parents deliver Noah to his preschool, and they take Gideon for a day at their house, at his grandparents. By 9:15am I have cleaned the breakfast dishes, washed the coffee pot for tomorrow morning, and I take my place at the dining table, open my laptop, thumb through the pages of whatever journal article is on my agenda to read that morning, and I stare straight ahead for ten minutes and fight back tears.

Gowned. Exposed. Dependent. Uncertain.

I regained my independence first by wheeling my own wheelchair, then by transferring independently from wheelchair to bed, then came the walker, the cane, steps with no assistance, and at each stage there is cause for celebration. When I was discharged the stages of independence continued: helping with watching the kids, then rocking one or two for bed, watching them for short periods while Whitney is away, and finally, I have all the kids for long stretches, even overnights, with no assistance.

This feat of childcare may seem to you as my natural responsibility as a father to my beautiful boys, and I agree. I share this because of special note is this: there are three of them, they are aged six and under, and anecdotally I know a handful of dads who struggle with their one or two kids for even a couple hours while their loved ones run an errand or grab coffee with friends. Three boys, all day and overnight, dressed, fed, and not dead is an accomplishment in independence for any guardian to young children.

This independence is not always the celebration I imagined.

Each stage of independence brings more isolation. I am dependent on others for help with transportation. Even though I am able to have all three kids, it is a struggle, and many in both my and Whitney’s family help a tremendous amount. And I thank you. But needing to rely on others does emphasize my limitations.

I am independent every Friday. Whitney is working. Kids are at school. My folks have Gideon. I work hard on those things that have become my work: reading, researching, writing, blogging, networking to schedule my next speaking event. Yet, in my freedom, I am isolated. The isolation is a feature of my dependency. I am proud and happy not to require daily, 24/7, help from others. I am proud that Whitney is able to take more and more time to focus on her self care, and is not so ceaselessly consumed with the care of her dependents, but make no mistake, indeed, I am a dependent in this relationship, no longer a marriage on equal footing, but one that tests the limits of “sickness and health.” We are in a marriage tested by our circumstances. Here I write, in the gap between independence and dependency, and in this space that is occupied by very few others, I am met with isolation.

 

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.