Patient Experience

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.”

 

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.

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.

The Illness Experience

My outpatient physical therapy office is located in the Eskenazi Clinic on 38th Street. Whitney is the (permanent) designated driver these days, which I enjoyed more when she was DD for pregnancy and a restaurant had a strong wine list, which includes reasonable price points. I will curate your dinner with $38-$43 bottle selections, and you’ would thank me when receiving the check. Give me a $1 oysters at a raw bar on a slow night, I’ll order Cava or a bright Txakolina, and we’ll be satisfied and “relaxed” for under $50.

Not much drinking these days.

South on I-65. Whitney is driving. This year I have effortlessly slipped into designated passenger mode. It is unfair to Whitney. I do not drive because I suffer from near-daily partial seizures that are controlled well enough on two seizure medications, but I have lost consciousness before, and God forbid that happen while driving our children or crashing into someone who is driving theirs. Hence my abstaining from driving is a safety decision, but it shifts the burden for providing transportation services for our family of five solely to Whitney. School, doctor appointments, swim lessons, “Little Ninja” classes, work, errands, grocery trips, pharmacy runs–this is not a small task.

She is my primary caregiver, my wife, my best friend, and that is before she even gets home to be mom to our three young sons.

South on I-65, Whitney speaks into her cell phone, “We are on our way. See you in 10 or 15 minutes.”

The lazy storm clouds roll their 1,00-mile-stare eyes deeply back into their cumulous heads while heavy drops of rain drizzle from their gaping mouths.

“He’s going into emergency surgery,” Whitney says, “we’re meeting his dad outside.”

Exiting onto 21st Street, my eyes fixed toward the sky, my body is pressed firmly into the passenger-side door. The storm rolls behind the foreground of a flagpole.

“Look for him. He’s wearing a dark t-shirt and khaki shorts.”

“Hm?” I murmor. I am lost somewhere amidst my short-term memory deficits, my wandering mind, the rain drops rolling down the window, and my Smashing Pumpkins Melancholy and the Infinite Sadness looped album playing the score to my life.

“His dad!” Whitney barks, “Do you remember?” [pause] “Adam! Do you see him? Do I drive around the roundabout? I can’t park here. Do you see him?”

When our story hit the Daily Journal we received an email to include us in a fundraising event to benefit families battling brain cancer. I had a bad day, and my seizure kept us home that evening. His dad knew our families are connected by glioma, and his fundraising efforts would benefit both of our families. “If this was his last public appearance,” his dad tells us through the open front-passenger window, brake lights refracting in the raindrops, patients sneaking out to smoke, “If this was his last public appearance, it was good to help another family, too.” He hands me a well-worn check from riding shotgun in his shirt front pocket. “We have been blessed,” he looks right at me, eye contact lock, only you know what you are going through, but we get it, even if just a little bit.” He reaches through the open window and pats my leg.

I fought tears riding home. Whitney and I both, silent.

His son died the following week.

 

There were no clouds to be seen on the morning of the Race for Hope D.C. “May I push for a while?” asked our (newly acquainted) friend, walking beside his wife. “I have a big left visual field cut, so you’ll have to warn me if anything is coming on our left side.” “Me too!” I reply, “we’re in trouble now!”

He pushed me for at least half of the 5k as our champions, our heroes, our caregivers, our relatives of those lost to brain cancer race beside and in front of us, running at brisk paces, stooping low to high-five me in my wheelchair, cheering me on, “SURVIVOR! WOOO!”

My  temporary designated driver, my new friend, my survivor model, looking strong after five years of surviving glioblastoma, and the scars, wounds, deficits, and pain that comes with it, his MRI scan was just returned reading progression. Tumor growth. In an act of biblical prophecy he posted earlier in the week about his anxiety. It proved a validated intuition. He is stuck in limbo between clinical trial ineligibility and inoperability, which is the better bet?

I sobbed. Whitney and I, silent.

 

I rode as designated passenger again today to join Whitney at work. I am immersed in medical culture. I read endless articles, press releases, Morning Rounds from STAT News, and I navigate the hospital with ease these days, peaking into patient rooms, and wandering by the trauma rooms wondering if I could earn a white coat before I die. Whitney found me outside the Starbucks typing away at my keyboard synthesizing weeks of research into competing theories of carcinogenesis. I am rarely pulled away from my computer with ease. Whitney knows this. She’s my designated driver. She says, “I’m finishing a note upstairs, going to the bathroom, then we’re having lunch. After lunch we’re going to see this couple I told you about.”

“Remember?”

I look up slightly with one eye raised toward Whitney. “Yea, I remember,” I say. “We will go after lunch,” instructs Whitney. I nod.

Our most recent of recent friends connected by glioblastoma are in an isolation room. Whitney helps me “gown up” and wrestles gloves on my hands as I’m still internally processing the paper I was working on twenty minute ago.

“You ready?” Whitney asks. I nod.

“This is the worst time you guys could have visited. The neuro doc just left, and we have a big decision to make whether we continue treatment… or don’t.”

I place one blue latex gloved hand onto the other, I tug at my quarantine gown and notice a glance of my wrist showing like I have violated an ancient biblical modesty commandment. I lock eyes with the patient’s wife, I dart back to the patient, I look to Whitney.

I think of the father in the rain. His son, back then, in emergency surgery.

I think of being pushed in a wheelchair on a 5k.

I think of my own road ahead.

Whitney helps me stand, and we de-gown outside. I fight back tears on the way toward the elevator.

“You OK? Whitney asks. I nod.

Often the illness experience has nothing to do with you as a patient, but it has everything to do with your insight gained by your patient experiences, and imagining what is to come.

I nod. I sob.

Visible Scars; Invisible Diseases

In this post I reveal complex emotions involving survivorship, other cancer survivors, and the general population. I share my vulnerabilities and insecurities. Yet also, in this post, I find strength.

I feel guilty that I am not more sick.

That is a strange emotion, isn’t it?

I feel guilty that I am not more sick.

I have incurable brain cancer. It is very unlikely that I live longer than four or five more years, and that prognosis is on the positive end of the normalization curve. Statistically only 37% of us with high grade gliomas make it to the milestone I just celebrated: one year post-diagnosis.

Yet, the sentiment remains.

I feel guilty that I am not more sick.

Of course, Whitney and I should not invite you to “save the date” for my funeral—that would be premature. Just this past week I was hanging out with other brain tumor survivors in Washington D.C. for the National Brain Tumor Society (NBTS) annual advocacy event, Head to the Hill (#Head2Hill). In Washington, Whitney and I met new friends, a few who have been diagnosed with glioblastoma multiforme (GBM), the brain cancer with which I have also been diagnosed. A few of these survivors are five years post-diagnosis, a milestone, which, according to the population statistics, only 5% of those diagnosed manage to achieve. Pace the statistics, at five year survival, many are looking well.

These friends lend hope to Whitney and me, and for me specifically, I benefit from these new relationships in unexpected ways. It is our scars.

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Adam’s Craniotomy Scar: Surgery, May 26, 2016; Photo: May 15, 2017. One year post-diagnosis.

Our balding or shaved heads are marked with telltale scars whose origin could only be traced to the razor sharp scalpel on the neurosurgeon’s instrument table. The surgeon’s confident and skilled hands unzip our scalps to reach our skulls.

With survivors, I do not feel guilty that I am not more sick. I notice our scars, and I know what these surgical wounds conceal: our invisible diseases. Seizures, headaches, light sensitivity, overstimulation and brain fatigue, memory trouble, word-finding issues, slowed speech and language processing, visual field cuts, proprioceptive deficits—that is, trouble finding our bodies in space, muscle weakness, off-balance walking like we are always stepping from stone to stone to cross a moving stream. The gestures that Jeep drivers and Harley Davidson owners signal to each other as they pass, our scars indicate to each other that we have a meaningful connection; that we understand.

 

The cancer patient experience is supposed to go like this: our hair falls out, we lose weight, we turn gray, we require IVs for pain meds, chemo infusions, and saline to keep us hydrated. We are nauseated and bed-ridden. We are sick—visibly sick. There is no hiding that we feel terrible. Hence, when we manage to rally and go out to dinner, or attend a concert, or take a vacation, our friends and acquaintances say things like, “I am so happy you are doing so well,” or, “you are such an inspiration,” or, “wow, you’re looking fantastic,” or, “you are so strong.” This all makes sense, because, you know, we kind of look like shit, with the baldness, thinness, pale color, and poor appetite. Within the proper framework, namely, the context of our diseases ravaging through our vulnerable bodies and toxic chemotherapies killing the healthy cells we have left, in they context a trip outside the home is viewed as victory.

And for many, it is. 

But for me?

I do not look this way at all.

Instead.

I feel guilty that I am not more sick.

For many of these sick cancer patients, god willing, their chemo infusions, radiation treatments, surgeries, and immunotherapies will shrink their tumors. Ultimately, the oncologist will declare the cancer is in remission, and all that will be left to remind us of their emaciated bodies, gray faces, and bald heads will be the photographs. In place of these sick and frail bodies returns the glow of good health. They have “beat” their diseases. They are true “survivors”—‘survivorship’ is a term with which I wrestle. In ordinary language many English speakers apply ‘survivor’ to a person who has faced a disease, condition, circumstance, challenge, and so forth, and this person has come out “victorious,” these people are “survivors.”

I recently commented in a science forum that I am “a survivor of glioblastoma” and the first reply stated, “congratulations you survived GBM, that’s a hard one to beat!”

At any rate, I am a survivor so far as I am not dead yet, and when I connect with other survivor sisters and brothers, well, this strange and unwelcome emotion turns up.

I am guilty that I am not more sick.

 

I tolerate my chemotherapy, which is administered in pill form, not IV infusion, and even though it is a chemically altered grandchild of mustard gas, and even though stated directions advise wearing gloves to handle the pills, and even though the morning after chemo I often both vomit and face constipation—a frustrating, confusing, and absurdly humorous combination of side effects, despite these ills, my treatment occurs within my house, not at the infusion lab, and if you were to join me for a meal, if it weren’t for my cane and awkward gait, you may not realize there is a thing wrong with me.

 

I see my survivor sisters and brothers hacking away at the underbrush of side effects as they trudge the overgrown path toward a clearing of rest, relaxation, and treatment breaks, toward remission. Sisters and brothers, you look like hell, but we are cheering you on! You feel terrible, but we are cheering you on! You haven’t had the strength to get out of bed in a month, but we are cheering you on!

Now maybe you are beginning to understand my counter-intuitive emotion.

I am guilty that I am not more sick.

 

I love public speaking, and I am better than competent telling my story and connecting a personal message to illuminate the illness experience for other survivors and caregivers. I went to D.C. to advocate on the Hill. I had a proposal accepted for an academic conference in June. I applied for financial aid to attend the Stanford Med X program in Southern California in September—fingers crossed. I continue to book speaking gigs, I accepted an offer to volunteer my time to a patient advisory council with a large non-profit cancer advocacy organization. I interview with local media outlets to say more about my family and surviving brain cancer.

I can do all of these things, so long as I pay attention to my nutrition, stick to a routine sleep cycle, double check my medication dosing and schedule, and continually monitor my fatigue. Keeping an eye on each of these variables helps to mitigate my headaches, seizures, balance issues, and so on.

I know that many of you are surprised when you meet me. Journalists who interview me, you know, for an interview with a terminally ill brain cancer patient, are often surprised. They non-verbally communicate their surprise when I greet them smiling and offer coffee or tea.

 

It is with anxiety that I face the uncertainty of feeling well today; it is heartbreaking to realize I am not as physically ill as my lung cancer sisters and brothers who cannot walk to the mailbox without extreme fatigue.

I am guilty that I am not more sick.

Your scars, my brain tumor survivor sisters and brothers, your invisible diseases for which we must fight to gain awareness from the general population, your friendship reminds me that the very best I can do is not hide my abilities in shame or guilt, nor should I shy away from discussions of my symptoms, but I should carry my strength and embrace opportunities to share my story, advocate, and change attitudes about what is the look, attitude, and ability of a typical cancer patient. The daily restrictions I place on my diet and activity earn me a generally good health. I am proud of my good health. 

Still. 

I feel guilty that I am not more sick.

 

We absolve ourselves of guilt when we recognize we could not have done otherwise. Maybe shallow guilt turns to deep regret when we recognize we could have done otherwise, yet we chose not to do so. To liberate our emotions of guilt it is important to communicate, contextualize, and identify the circumstances of our feeling guilty, and next to recognize how things could have been handled differently. If you feel guilty, ask, “could I have acted otherwise?”

I feel guilty that I am not more sick, but my body’s subservience to cancer and its concomitant toleration of treatment are both beyond my control. Neither guilt nor regret should grip us, so long as we take active steps to maintain our awareness of possible actions and outcomes in all situations, and we work to promote that awareness with others.

I must work to absolve myself of these guilty feelings of survivorship. The better use of my health, if better than other survivors’ health or not, is to stay the course of my advocacy and lend voices to those whose have been silenced by disease.
I wear my scars for what it communicates to other survivors. It cuts through the bullshit. And for those who may notice their own guilt for not recognizing the invisible diseases in friends, family, and acquaintances, absolve your guilt by seeing things through and choose to act otherwise. To survive we need us all at our very best, not feeling guilty that we are not at our worst. 

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.]