Patient Experience

On Survivorship, from the Survivors

“Why does mommy have to work all the time?” Our three year old, Gideon, asked through broken sobs when I greeted him at his crib one recent morning.

“I’m sorry, buddy, we all miss her, don’t we,” I replied, my own eyes blurry and breath shortened, choking back tears of my own.

Later this same day, or the day after, rinsing dishes following breakfast I began sobbing.

“Are you sick, daddy?” Gideon asked.

“Yeah, bud, daddy is sick,” I say.

“Are you going to throw up?”

“No,” I chuckle.

Scenes like this play out frequently, swapping the subjects and settings, themes are similar.

 

Our family is slogging through a waste-deep sludge of survivorship, and like quick sand, we seem to sink more each day. The new experiences of active cancer care are behind us. The quick wins and short-lived milestones are long past. Setting our eyes to the horizon reveals more angst than anticipation.

We lug the bags of survivor’s guilt behind us, recognizing we have these moments together, moments that many families did not.

We lug the bags of insecurity, too, second guessing our decisions to work, to keep busy, to be productive, to send the kids off to daycare so that I may sit in an empty house to write in an effort to satisfy a life project–papers, books, or posts–at the cost to my family of lost wages and absent parenting.

Whitney experiences terrible guilt leaving the house each morning. I feel terrible guilt that she has to.

 

I sat across the coffee shop table from a close friend last week, a rare trip out of the house. I shared with him the idea I was trying to make sense of: when I search for meaning and purpose, in light of my predicament–uncertain life expectancy, a desire to live fully today, a desire to aid Whitney with financial stability, a desire to achieve future aims–I am motivated to say something helpful to others about what it is to grieve the loss of future possibilities that will likely never come to be.

“I’ve never thought about this before,” said my friend, “but now that you say it, it seems so obvious! You’re experiencing things we all experience in our lives, but your experience is more […] compressed.”

I nodded.

I’ve alerted myself to this insight also. Several months following my diagnosis, when I was wrestling with acceptance of a terrible disease and what it amounted to for my life and the life of my family I expressed something similar, “my life is like everyone else’s,” I said, “but the volume has been turned up.” I was trying to get at this notion that each of us gives some thought to our relationships, to goals and priorities, to what legacy we build, and to thinking of our own mortality. For me, these occasional considerations are amplified. Or, as my friend put it, “compressed.” They become daily, high-pressure considerations and decision points.

“A lot of people work through the decisions you’re making, and they take 20 or so years to do it.” This was the response from a friend, a palliative care physician, when I rattled off the horizon of possibilities for my future direction, possibilities that narrow more each day. “But of course, you don’t have 20 years, do you?”

 

I am a member of a loving brain tumor community including patients, care partners, loved ones, researchers, and clinicians. Struggling with survivorship, I set out to write this post–in fact, much of what you just finished reading was my first pass–in hopes it would meet others where they are, in their own struggles as a spouse, child, sibling, parent or guardian, also slogging through survivorship. Then I realized, we are a community, and if the sign posts I’ve been reading are correct to signal I speak in ways that amplify the experience of others, how might we all learn together from our shared yet unique experiences.

I posed the following question vis-a-vis Twitter (in the following quote, I spelled out the hashtag acronyms, with brackets):

Drafting a blog post today about #survivorship. What issues do you find most challenging to navigate after the dust settles from the shock of diagnosis? #btsm [brain tumor social media] #btsmqol [brain tumor social media quality of life] #ptexp [patient experience]”

The community responded with thoughtful, vulnerable, and honest replies. My mood immediately lightened as I experienced the embrace of a community that stands shoulder to shoulder with each other as we experience our disease from our unique perspectives. In the following paragraphs, I report on many of the replies I received to my prompt. As a note of caution, I quote responsibly, but I also present these replies thematically through the lens of my own worldview. As we say on Twitter, retweets are not endorsements, and opinions are mine only!

I consider it an important observation that an inability to work and provide for one’s family is one of the most noted difficulties when navigating a brain tumor diagnosis. I ask rhetorically what does it suggest about our culture that in the face of serious illness it is employment and income with which we find our selves concerned? In my life I’ve sacrificed time on personal projects in order to fit in working hours to earn income. This is a perennial issue for me. My good friend @JBHarp82 put things most bluntly. She replies, “Guilt:feeling like a burden on others at times when unable to do things ie: not working full time to contribute financially as before.” Another reply suggests the painful loss of productivity, “it’s disheartening that while I don’t feel less intelligent, I am much less productive” (@mcintose)

It seems addressing, defining, measuring, and evaluating value and productivity are possible gaps for people living in a period of survivorship. How might our goals of care better close this gap?

Our social life is impacted, and this theme shows up in many replies, “Dealing with family/friends who say, ‘you’ve changed'” writes @PatientAdvocac4. A more direct critique comes from @Lahla42928400, “…being careful about who I let in- too many assholes out there…” Before you find that remark too harsh, here it is in softer language, Again, @JBHarp, “Loneliness:everyone comes out of the woodwork offering support but once the initial shock wears off & surgery/initial treatments & restrictions are lifted, you don’t hear from anyone anymore it seems.”

Our friends play such a vital role in helping to process our experiences, and we need those friends to match our tenor. @Emi_Livingston gave voice to this concern, “dealing with people who are still in the ‘shock’ phase, and/or who focus on the negative when we want to embrace what’s normal and focus on moving forward actively.”

How might we better revise our cultural and social norms to encourage friends of those with serious illness to remain engaged through all stages of care, not only the most acute and interventional stages following disease onset and diagnosis?

The anxiety of survivorship comes up again and again: worries about the next MRI (@JBHarp82), “Waiting for shoe to drop recurrence (already thinking of next one and just beating this time,” wrote @RipsRant. With a reminder that patients are not only tuned to their disease, @inewsham offers this insight, “Hearing about others whose cancer has returned and trying to keep those fears at bay.” For example, the death of Senator John McCain rippled through the brain tumor community regardless of political, demographic, and socioeconomic lines, I do not only speak for myself when I say we collectively mourned for the Senator that day.

Another theme to emerge is the drive toward acceptance of the “new normal.” “You’re all brave amazing people,” cheers @ChloeDrew8. She continued, “The new ‘normal’/facing life so differently to before is not to be underestimated.” The tremendous resilience and effort toward acceptance is visceral in this comment from @NancyNHuang, “I’m 2 years out and can pass for normal, but have come to realize that I will never fully recover. That is hard.” Or imagine this experience reported by @Project2Program, “After two surgeries, double radiation treatments, clinical trials, multiple chemo treatments and recovery from adverse events our biggest challenge in terms of #QOL [quality of life] is fatigue.” Striking a chord with balancing factors, @Sabine_NJ writes, “now:parenting; balance between living life (traveling) and family life.”

How might our care teams come alongside the persons under their care to pursue aims in light of the “new normal”? What we call the new normal is this period many call survivorship, and the challenges exceed those I mentioned in this post, which were: value and productivity, social life, anxiety, and ultimately accepting a new phase of one’s life, one that is like everyone else’s, maybe, but amplified and compressed.

How might we all better learn from the experiences of the seriously ill?

I was not able to include all of the many replies to my prompt. I thank all who ‘liked’ and ‘retweeted’ the question. To follow all the incredible members of our community, please navigate to Twitter and search hashtag #BTSM

Surviving to bear witness

Sunday, June 10, 2018 marks two years after Whitney and I were transported in a wheelchair accessible van from an inpatient acute rehab facility to the IU Health neuroscience center. We sat in my neuro oncologist’s office and received news of my glioblastoma diagnosis. A kind, compassionate nurse who would become more than a member of our care team, but also a dear friend, held each of our hands.

 

I am unsure of what to say on the day of this important milestone, but I am compelled to offer a few words–really, the task of this blog.

 

I published my first post to this blog in October 2016. The staff physiatrist discharged me from inpatient rehab four months prior, and I received the GBM diagnosis only weeks before that discharge. In October 2016, I recently completed a six-week daily chemo and radiotherapy protocol, and I began the ‘maintenance’ chemotherapy cycle: five days, high-dose chemo, followed by 23 days off, and repeat.

 

I struggled to settle into a rhythm and direction for this blog.

 

Early posts revealed a thinking-out-loud style of scientific explanation, connections with philosophy, and personal narrative about a young man, husband, dad, brother, and son, internalizing a devastating cancer diagnosis. I wrote many posts with an aim in mind that never fully materialized. Posts proved too scientific for casual readers, too flimsy for academics, and too personal for many friends. I continued to write, striking a chord with some here and there. Often the reader thanked me for keeping everyone up to date, among other encouraging remarks, noting my positive attitude, vulnerability, and bravery. On the latter, I call up Abraham Verghese writing the Forward to Paul Kalanithi’s, When Breath Becomes Air. Verghese (roughly) remarks, “how brave it is to reveal yourself in this way.”

 

If there is bravery to recognize, it is rooted in my vulnerability.

 

In July 2017, nearly one year after our trip to the neuroscience center, news broke of Senator John McCain’s diagnosis. I was first notified in a tweet (a “mention”) by an academic colleague. I wept. I wept for the Senator and his family, for me, and for my family. I wrote an open letter to McCain to be published in medical journalism outlet, STAT News. The letter received an overwhelming response from people affected in one way or another by GBM, including newly diagnosed patients, others living with the disease, care partners of those with the disease, and relatives of people with GBM who died.

 

Article comments, increased blog traffic, and a full inbox signaled that my commitment to continued writing and posting found an audience. That audience, my audience, includes those closely impacted by this disease. Comments and emails expressed an important and instructive theme: people seek to tell their stories and impetus to do so may be triggered when people share a common suffering. GBM is diagnosed in three people per 100,000. This qualifies GBM as rare. Compare GBM incidence to breast cancer, which is diagnosed in one person per every eight. Nearly 300,000 people are diagnosed annually with breast cancer, contrasted with 14,000 cases of glioblastoma.

 

Consider the disparity in incidence rate.

 

I note these statistics only to emphasize the reality that if you’re looking for a resource to discuss your illness experience, the peer population is disproportionately small contrasted with the horror of the disease, for those with rare diseases such as GBM.

 

It is an honor to receive and reply to emails from people impacted by GBM. Many of these patients and care partners are now friends. Sadly, I have heard from loved ones about the death of people I emailed with frequently. It is a sample size of a population dying in the thousands each year; nonetheless, these are deeply personal losses. I am humbled to consider that in the final weeks, maybe days, before death, I was in active dialogue with a (now) late friend. I thank the loved ones who exhibited vulnerability, hence bravery, to open an inbox, to read email conversation threads, and to inform an unknown person on the other end of an optical fiber cable their loved one is now gone.

 

After living with this disease for two years, I extend my deepest gratitude to those who follow my journey. Thank you. We mark this milestone together.

 

To the patients and care partners who look to me for next steps in their own journey, or to reflect in the rear view mirror to recall and process their own experiences, I mention the broad range of experiences shared across a rare disease population, but notice each is unique to the individual.

 

Telling our stories to each other, to our social circles of influence, and to our clinicians is an effective way to locate our agency, that is, to discover those outcomes for which we may exercise control, amidst a disease and circumstance for which an abundance of variables exist outside of our control. Expressing our experiences through storytelling is  an effective means of establishing a supportive network who endure the journey alongside us, and yes, to celebrate our milestones.

 

It is a fitting conclusion to say a few things about where I am today. The reality is when given a life-limiting diagnosis like GBM, everything changes, yet, surprisingly maybe, nothing changes. I am still uncertain of which alternative is favored: for all to be different or a return to the familiar.

 

Frustratingly, maybe, but not uncommon in spaces between such tension, the answer lies in the middle.

 

Many think, mistakenly, by my judgment, that a life-limiting diagnosis affords an opportunity to sort out priorities and pursue “what matters most.” For many, physical impairment, cognitive deficit, decreased life expectancy, and financial toxicity limit the pursuit of new or revised priorities and mythologized bucket lists.

 

What is different is the perspective that must be adopted. You still must do the laundry, but you fold the shirts with acute knowledge of your own mortality.

 

Two years following my diagnosis, the Adam that existed pre-diagnosis is dissimilar from the Adam, now two years on. Though, these historically competing personal identities are far from strangers. I continue to enjoy coffee with former faculty and friends, I recently submitted with a friend and colleague a co-authored chapter to an academic press, I try, and often fall short, to balance my responsibilities to my wife and family with my own aims and personal projects. I returned to work. I maintain responsibility for house chores that I am capable of completing. These activities are familiar and routine.

 

After an especially busy travel season, where I was in Chicago, D.C. twice, and San Fransisco within a six or seven week period, my wife reminded me that while I aim to leave a legacy in the world, my greatest contribution to the future is a commitment to be present with the family; with our boys. This tension exposes the dual nature of illness: to serve ourselves before we cannot, or to serve others while we can.

 

There is little success to be found in chronic and advanced illness. There is no victory, fighting, nor conquering. I find these frameworks for illness harmful. So also, there is no succumbing to disease nor losing the battle. There is life. There is death. What there is, is enduring. Enduring is another name for survivorship. We survive to bear witness. Bearing witness is vulnerability, and it is vulnerability we recognize as bravery. Survivors are constrained to record their experiences. To leave behind something permanent from the ephemeral.

 

If there is something Whitney and I have sought to teach others, lessons we learned ourselves, it is we live to bear witness to endure each day. Our endurance is strengthened when we commit ourselves to being on the journey with others. Thank you for hearing our story and for telling us yours.

 

Enduring. With vulnerability. With bravery. Together.

 

June 10, 2016; June 10, 2018.

xoxo.

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.