Four Months, Four Years, Four Lessons: Notes on Survivorship

“My surgeons’ skills have added time to my life, more time with my wife, more time with my kids. Thank you to my entire medical team.”

Adam, October 13, 2016

I published my first blog post to this site in early October, 2016. That post came right around four months after hospital discharge (the “Four Months” in the title of this post). I checked into the surgery floor at IU Health Methodist Hospital with Whitney early in the morning, May 26, 2016. Four years ago, to this day, May 26, 2020 (“Four Years” in the title).

In my first personal blog post, I wrote the words you see quoted above. I include those words here to signal my continued gratitude for my team. These thanks are well placed, as our family recognizes this significant day in our calendar.

Today marks four years after my craniotomy and surgical removal of a seven centimeter primary brain tumor from my right parietal lobe, an area of the brain responsible for five major functions, including sensation, motor control, and spatial reasoning.

Today we met (virtually) with my neuro-oncologist to hear the results of my recent MRI scan completed Saturday (May 23, 2020). This is a scan we will not soon forget. Masked, we entered the hospital Emergency Department because the general radiology entrance is closed on the weekends. (Radiology shares a back hallway with the ED for trauma-related imaging.) The security checkpoint includes a metal detector that reminds us of the complex social conditions that surround the lives of some people cared for at the county hospital. We also wondered what further precautions would shape the encounter during a time of covid-19 related restrictions.

Whitney and Adam pre-MRI, May 23, 2020

Worth mentioning, also, after an area of slight concern appeared on our prior MRI in February, our oncologist recommended adding an imaging technique called perfusion to this recent scan. The perfusion technique lengthens the duration of the procedure by several minutes and includes placement of an IV and additional injection (beyond the routine contrast dye) to study blood flow.

Here we were, then: After four years, something like 25-30 scans, despite our typical anxiety (scanxiety) that accompanies each routine MRI, we faced new circumstances, if only slight disruptions: Whitney’s recent course of illness after testing covid positive, the masks we donned, the secure entrance, distancing from others in the registration line, the new imaging technique, the empty hospital absent of visitors, and the pervading concern that maybe we were catching new tumor growth in its nascency.

Our visit this morning revealed news of a positive outcome: The scan shows no new growth, and our doc chalked up the concerning area to late-effect radiation damage. We might relax our concern for the near-term, and we look to August for our next routine MRI.

I do not want to let this day pass without offering something constructive after 48 months living with a disease that kills many in half that time (“Four Lessons”). These are not definitive, action-guiding principles for life. They are simpler. They are variations on a theme that I shared during a talk at Stanford Medicine X in 2019, refined and updated for my presentation at the End Well Symposium at the end of last year, and shaped by the contours of my personal manuscript that hopefully finds its way to print over the next year. These are lessons from living, while dying.

Consider your quality of life today. When faced with a decision in the operating room to pursue aggressive surgery at the risk of left-sided paralysis or take a conservative approach that would protect my motor function but leave tumor remaining in the margins of the surgical area in my brain, my surgeon instructed that I, “Make a decision based on your quality of life today, not what you think it may be in the future.” This turns out to be good advice for living in general, not only in the operating room. Each of us has an uncertain future. It is good to plan for the future, mitigate against harms and obstacles, and yet all any of us have for sure is the present moment. Arrange your life so that it aligns with your desired quality of life today, not an imagined future.

Face fear with familiarity. Focusing on the present and allowing the future to unfold is frightening because it asks first that we allow the uncertain and unknown into our lives. I suggest that we face fear with familiarity. What information is available to us today? What is within our control today? What is the immediate source of our negative emotions and intrusive thoughts? Becoming familiar with those things we may attend to in the present helps us acknowledge our fears, not to escape or dismiss them, but to become familiar with the inner workings of our brains that are wired to alert us to danger, even when that threat isn’t right in front of us. Familiarity is the antidote to fear, and I am reticent even to express this sentiment because fear is not intrinsically bad. Allow yourself to fully experience that breadth of human emotion, but center yourself with the focus on what is present and at-hand.

Consider what to say to a cancer patient. When I instruct others to consider quality of life today and leave the future uncertain and unknown, I am flirting with everyone’s favorite thing to say to cancer patients, “I could get hit by a bus tomorrow.” This phrase and the war metaphors that are prevalent in disease rhetoric are two facets of the illness experience that I’ve objected to in blog posts, tweets, and op-eds. They are more than unhelpful; they are harmful. Taking the latter first, the problem with framing cancer as a fight or battle minimizes the potential for wholeness and wellbeing that are available when an illness is embraced into our life narratives. A war leaves casualties, winners, and losers. Surviving is not a victory and death is not a failure to fight. Instead, maturity and growth through illness are possible, whether treatment leaves us with no evidence of disease or end-stage progression. Wars and battles leave little room for growth and acceptance, what scholars call existential maturity.

This advice specifically, and the next, are sensitive to the context of the patient and their preferences. I know many patients who frame their own experience as a fight, and that is their metaphor to claim. For me, in my most insightful moments, I’ve felt more the sage than the soldier. Illness leaves us with wisdom, not war.

Rethinking thoughts and prayers. This is a tricky one. We each are licensed to our beliefs, and all of us should extend as much charitable interpretation as possible to the words that others speak to us. I remind myself often that others express their very best intentions, and those intentions supersede the literal words they use. Though I’ll say this, it is very common for folks to cope with another’s serious illness by fitting that person’s illness into a Divine plan. I cannot get on board with this. It does not fit my conception of The Divine to imagine that I was singled out, given a potentially life-limiting disease, and by those circumstances, forced our kids to face the loss of a parent, so that God could teach a lesson through my experience. For God, whatever God is, surely there is a better way to teach lessons than clamp me to a table and open my skull. When encouraging someone facing illness, center your religious beliefs in what brings you comfort as the friend and observer, but be careful not to thrust your beliefs onto the person experiencing the illness. I recognize that your show of support for me is expressed through your carefully considered prayer and meditation for my healing, but healing may not be a cure. The healing may be my acceptance that no cure is available.

As you move forward, navigating these uncertain times of public health crisis, you may consider these lessons that I’ve practiced these four years: Align your decisions to your desired quality of life today. Live presently and familiarize yourself with those things that you fear. Consider healing, wellbeing, wholeness, and personal growth that may come through experiencing illness. And extend charity to others while respecting their beliefs.

Living with Cancer: Insidious and Destabilizing

“Don’t think, daddy! You can’t think right! You have a brain boo boo. Just ask me next time.”

Isaac, our confident, insightful seven year old, the oldest of our three boys, said these words to me this morning, when I shoved his lunch box into his backpack while rushing out the door to catch his school bus. The prompt for his cutting remarks was my explanation of the contents I packed for his daily lunch. “I thought you liked that stuff!” I muttered dishearteningly, with a mixture of confusion and exasperation.

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Isaac, seven years old, before school, January 2019

My crime: thinking, or rather, as we may say as adults, assuming, and on that charge, I am surely guilty. I assumed a handful of snacks, protein, a juice box, and a square of chocolate would be a fine lunch for our oldest guy who is limited in his food options, after Whitney and I discovered, with the help a functional medicine practitioner and blood, urine, and saliva testing, that Isaac suffers from several food allergies.

I’ve raised before the issue of talking to kids about cancer, but what we face, the daily grind of parenting three young boys, my spouse who must work outside the home to serve as our primary earner and carry our medical benefits, and the primary at-home guardian, me, suffering from brain cancer and the host of accompanying neurological disorders–namely, headaches, seizures, and motor impairment–is a combination of factors that affects our kids in untold ways. It affects me, too, in a deeply fracturing sense. A fracturing of my will from my ability; my plans for the future and my practical responsibilities.

Surely we all squabble with our kids, and for this reason, motivated by a desire to connect, or to comfort by striking chords of relatability, or for fear of peering too closely at a situation that is all too frighteningly real, friends say to me, “yeah we get lip from our kids, too,” or “we also have a picky eater.” But the burgeoning independence and personality of an oldest child, or picky eating habits or allergies, and even the stressors of an at-home guardian fail to address the insidiousness of serious illness.

“You can’t think right! You have a brain boo boo.”

 

The 17th c. philosopher Thomas Hobbes, in his important work, The Leviathan, envisions conditions for people absent of government oversight: a “state of nature,” he called it. Important to note is that Hobbes is writing in a time when Europe is ravaged by a bloody civil war and political crisis. At any rate, Hobbes considers life to be “solitary, poor, nasty, brutish, and short,” in this state: “a war of all, against all.” Hobbes did not consider this a historically accurate description of pre-political humanity; rather a thought experiment to motivate his political theory.

During my first semester as a philosophy undergraduate we read excerpts from Leviathan. My professor pointed out the “insidiousness” of the imagined “natural state.” The point, my professor emphasized, is not that everyone is locked in combat. Instead, the threat of instability looms large, and this unsettling psychological state is a hinderance on people’s desire to live well.

 

Living with cancer is insidious and destabilizing. A psychologically unsettling state. After active treatment has ended, at least for brain malignancies like glioblastoma, patients enter a period of disease monitoring: MRI (brain) “scans” every eight to twelve weeks. The return (recurrence; regrowth) of glioblastoma is near certain, regardless of surgical success or response to chemotherapy. After recurrence the disease is near universally fatal, and the five-year survival rate is a dismal 5.5%.

 

My working life, that is, “work” in all forms, including: my paid part-time work, and also writing (blog posts like this that you are now reading), speaking, interviewing, advocating, and so on, is taking its toll on me both physically and emotionally. My days end in fatigue, and continuing to tell my story, though with innumerable positive implications for myself and others, is also like retuning to the scene of the crime. I am surely threatened by this destabilizing psychological state. Do I continue to work? Do I retire to a life focused on family and permit myself to let go of self-governed responsibilities, or, like Hobbes, are these self-governing practices the only things separating me from a natural state?

 

Following my son’s ill-delivered but insightful advice: it would be better not for me to assume, but to ask all of those closest to me and to myself, how might I best seek a life well-lived?

Senator McCain: Living Well Until The End

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

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

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

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

 

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

 

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

 

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

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

 

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

 

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

 

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

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

 

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

 

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

 

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

 

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

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.

Inside My Head, Now on YouTube

On May 13, 2016, Adam was ordered to a “stat” MRI by his primary care provider. The scan revealed a 71mm primary brain tumor that would be diagnosed as glioblastoma multiforme (GBM), a deadly and aggressive brain cancer. In this talk Adam shares his journey (so far) with GBM, and he highlights lessons that are applicable to everyone.

Please click to view the one hour talk now available on YouTube.