survivorship

The sick role

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Curing my brain cancer would be a good start.

 

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

 

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

 

We have more work to do.

We Wait. We wonder.

Many have reached out to our family recently with help or requests to offer help. For that we are grateful. Many have said, “what can we do?” We invite your support. I want to address what is so challenging about living life with advanced cancer. If you are interested, I encourage you to read on, to learn more about the difficulties of “survivorship.” If you would like to help, you can find information near the end of the post. If you are facing your own experience of illness or are affected by those who are, this post may shine a light on these challenges, so that you may be supportive to your loved ones. We truly are in this together.

 

When facing a serious illness, in our case, a terminal cancer, the diagnosis–receiving it, I mean, sitting beside your spouse or loved one, across from your oncologist, while their nurse reaches to grasp your hand–is a watershed moment of devastation and uncertainty, but before planting your feet on the ground, you are undergoing more scans, preparing for surgery, coordinating daily rides to the radiation therapy treatment center, and learning how to mitigate the side effects of chemotherapy. This is “active treatment,” and for all of its complications, interruptions, and social costs, at least you are “doing something.”

After active treatment, after the diagnosis is accepted, after life with brain cancer shifts from the center of your life toward the background and casts a shadow to shade every experience, this is when we feel most helpless; frustrated.

This is survivorship.

I’ve talked about this before to describe the uncertain period of time after active treatment, but before “disease progression,” the clinical language for the growth of cancer.

Brain cancer, even after near-total surgical removal, can, and often does, “recur” because microscopic cancer cells are difficult to distinguish from healthy tissue in the brain, and these hidden cells grow quickly to form new tumors. In the words of my neuro-oncologist, “it is extremely unlikely that you will not have a recurrence.” It is so unlikely, in fact, that we wring our hands nervously every eight to twelve weeks, waiting for the MRI results, for “disease monitoring.”

Scanxiety.

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An MRI scan showing the “surgical cavity” after removal of Adam’s brain tumor. The darkened area is the void left after removal. The lighter areas are inflammation and possible cancer cells.

But regular episodes of brain scans, or “imaging,” and the 24 to 48 hour lag time to meet with our oncologist to hear the results, does not adequately capture the full experience of living each day with this ambiguity. Imagine that regrowth of cancer is imminent, but when the recurrence may occur is totally uncertain. There are no preventative measures to be taken; no clear actions to mitigate the risk factors; the risk factors, themselves, are unknown.

People often say, “I could get hit by a bus tomorrow.” Yes, you could, and yes, that’s a good reason to put your heart and head into something that matters to you every day, but waiting for disease progression is different. See, I know the bus is coming, I just do not know its route; whether it’s running on time. I do know that as my disease progresses I may be subject to a second (or third, fourth) surgery, or more radiation therapy, likely to cause cognitive impairment after the first round beamed a lifetime dose into my brain as part of the standard treatment protocol. With progression, I may expect language impairment, loss of memory, personality changes, inability to read or write… these are all possible symptoms to present if (when) the bus shows up.

So we wait.

We wonder.

We dress our children and stir the oatmeal. We sign homework folders and take out the dog. We manage the logistics of three children and a single driver. We swim against the current of cancer to create a childhood for our kids that resembles normalcy.

But it isn’t.

It isn’t normal.

We sign up our kids for soccer, and another in art class, and we move money from one credit card to another with a lower interest rate, and we scribble back of the envelope calculations every month to make sure we’ve earned enough to pay the bills, always mindful that if my income exceeds the Social Security Administration earnings cap, which is federal poverty level, my disability disbursements will be cut back or suspended, disincentivizing work, even the little I can tolerate on a restricted hours, work-from-home status.

We wake up some days and speak to 130 first year medical students (like I did recently), and we take the main stage of conferences to motivate change in healthcare (like I will next month), and we organize local fundraisers to raise thousands of dollars for brain tumor nonprofit organizations (like a team of us have done for two years), and we put on scrubs and help care for people after strokes, trauma, amputation, while our loved one struggles with their own health at home (like Whitney does each day).

We wake up other days, nauseated, lightheaded, and we wonder if these are early signs of recurrence. Or maybe just a headache.

We wait.

We wonder.

It isn’t normal.

You affirm every day that it is good to be alive. And it is good to have the opportunities to take a terrible circumstance and channel that energy toward good works. You are grateful for supportive employers who let us get away with far too much, and appreciate our work all the same. You acknowledge a terrific community of friends and family–and strangers–who send gift cards in the mail to buy groceries, or cut generous checks that cover a month’s worth of rent, or discreetly hand over folded bills to purchase nutritional supplements for your oldest child who’s at risk for developmental delays, if he doesn’t gain weight and increase calorie consumption, so they tell us.

But you recognize that community support has a limit. And asking for help is humbling, if not humiliating, and you think maybe you should bite the bullet, find a way to return to work full time, lose the benefit status, but make up the earnings in income. But you reflect that people with “normal” life expectancy end up wishing they pursued something more aspirational with their lives, and you do not have normal life expectancy–”it is extremely unlikely”–so why fight symptoms and fatigue in a modified or adaptive work setting, when your time can be filled reminding healthcare that it’s a human practice more than it is a scientific one (as I have tried to do speaking and writing). With all of these thoughts circling your mind, you are grateful you’ve lived for three years with something that kills some people in ten months, but you ask, how can we live three more years this way?

We wait.

We wonder.

I was diagnosed with glioblastoma 38 months ago. Our community has carried us these three years. You gave generously to our family in the Fall of 2016, immediately after diagnosis.

Now we invite you to support our family again.

Whitney and I have lived in the open with blogging, speaking, and often, wearing our hearts on our sleeves. It is in this spirt that I tell you, we have deliberated the publishing of this post for the past several weeks. The problem we face after three years of survivorship is summed up in this article review of a recent National Cancer Institute (NCI) report: “patients with malignant brain tumors accrued health care costs that were 20-times greater than demographically matched control subjects without cancer.”

Despite Whitney’s tireless work with four (yes, four!) jobs (1. inpatient occupational therapist; 2. sub-acute care for the elderly occupational therapist; 3. developmental preschool occupational therapist for children; and 4. part-time yoga instructor), and my part-time work and occasional honoraria for public speaking, plus my disability benefits, we close the monthly budget gap with credit cards. Copay expenses go toward my medications, specialists, and our share, after insurance, of the $115,000 brain surgery that gave me the best chance at longer-term survival.

We must ponder the following questions:

Medications or kids sports?

Copays for the best doctors and mental health professionals for our kids or trips to the zoo and new clothes for school?

The freedom for me to speak at medical conferences, publish articles, and continue work on my book manuscript or exhaust all of my energy reserves working as much as my income cap allows?

Maximize each day of my limited life that remains, whether that is three months, three years, or thirty, or sit at the dining room table with Whitney for another month worrying about bills?

The choices we make are choices of personal goals and values. Whether your values align with ours, influences your decision to help in the way we are asking. If we are not so aligned, that is OK, too, we are still in community.

For those who have helped us: friends, family, siblings, parents, cousins, faith community, former professors, we thank you.

For those curious how you may do more, we have launched a GoFundMe to help our family close the monthly budget gap. If nothing, we have tried our best to be transparent through illness. We thank you for donating toward meeting a $8,000 goal to give our family a little breathing room this Fall.

A&W | #AandWTumorTakedown

Unraveled

“I think this is the winter everything unraveled.”

 

I sent this text to my spouse, early Sunday morning, February 2019, calculating battery time remaining on our family iPad, as the kids huddled on our bed, while the neighborhood lie dormant with a power outage. Thick February skies quieted our home, and a drizzle of late winter rain needled dry, fallen leaves as they leapt from brown grass, animated by gusts of wind.

I took my usual position, leaning against the kitchen counter, near the coffee maker (currently, useless), and I scrolled my Twitter timeline. Social media is one of a few avenues for my peer engagement. My driving restrictions limit my time outside the home, and so, my adult interactions. My spouse and I desire, naively, for ourselves, parts of the lives each other leads. She prefers to stay home with house chores and our kids. I prefer to be in the world of work and errands, engaging peers and colleagues.

Or so each of us thinks, anyway.

The grass-is-greener phenomenon describes our envy. I suspect many working parents or guardians, with an at-home partner, relate to these emotions. We sell short the feelings of our partners when we project our idealized circumstances onto the other, “if I were in your shoes…” This tendency to imagine the best case scenario and fault our partners for either complaining about, or failing to recognize, the privileged position in which they hold, may be explained by a failure to listen closely. The daily texts, abbreviated and curt phone calls, the end of day exasperation, sighs heavy with frustration, and hyperbolic complaints (“I just can’t do this anymore”) indicate that we feel our voices are not recognized; that we do not feel heard. Quieted.

Empathy is something like the ability to take on the mental states of another person, but too easily do we slip into ourselves, experiencing what the other faces, rather than stretching our imagination to consider how might we feel if we were the other person, replete with their body, feelings, emotions, circumstances, and standpoint, facing those same circumstances. Sympathy describes the former; empathy, the latter. Sympathy is the identification of challenges facing another, and we consider what if we were “in your shoes,” as I mentioned. Empathy requires deeper consideration. We may ask, “what if I were this gender, with this age, with those lived experiences, with these responsibilities, facing this situation. That is empathy. We won’t get it right. Sympathy is cheap, and empathy requires practice. Cheap and easy often trumps deeply considered and practiced.

Sympathy is extended in virtue of a power dynamic, where the person expressing sympathy assumes they understand what the other person is experiencing and takes license to dole out advice. Empathy reveals vulnerability because it undermines our power. A truly empathetic expression–if one is achievable; see: consideration and practice–reveals that we have limited means to truly imagine our way into the experience of another. We are restricted and biased by our own experiences. We cannot separate completely our unique perspective and position from the perspective of whom we are attempting to relate to empathetically. And so our power, our confident, arrogant, envied, “if I were you,” power must be set to one side. We must admit we are powerless to adopt another’s perspective. We are mistaken to think our “if I were you” advice is either helpful or relevant. At best, we practice empathy.

Practicing empathy requires a commitment to listening closely. Like reading the words of a compelling novel, we must give ourselves over to the narrative. We cannot hear the story through our eyes. We must stretch ourselves to becoming that character featuring in the narrative, while admitting our ignorance and powerlessness to achieve this aim. The attention paid to our favorite novels guides the attention we are to pay to our loved ones. Though, in the real life interaction, our imagined character has a voice, speaks back to us, co-creates a shared space for meaning, where the words and events one person selects to construct and share are risk-laden sacrifices because we offer ourselves with no guarantee the stories we tell are interpreted with the intended significance. Our meaning may be lost in the transmission. The author of the novel recognizes this tacitly: the words on the page are open to interpretation. We do not recognize this so easily as speakers in relationship because we rely on the nuance of verbal communication. Still, interpretation features saliently in how we perceive others.

In this way, sacrificing ourselves on the alter of intended meaning is an act of vulnerability. We give away our power to create meaning for ourselves by transmitting our meaning-laden experiences of the world into the shared space of co-creation, between ourselves and another. If I were to generate the confidence to share my feelings, I cannot be certain those feelings are respected with the same reverence for which I hold toward them, in virtue of those being my feelings.

Practicing empathy forces us to pursue an unachievable end, and to admit our powerlessness to embody the experience of another. Even a very close, intimate other. We act vulnerably when we admit we have little license to say confidently, “if I were you.” Sharing our experiences is likewise an act of vulnerability. We are powerless to convey the deep, personal meaning of our experiences. And so, interpersonal communication, by virtue of its very nature and aim, is a resignation of power. Those with whom we communicate most intimately, where the stakes are highest, with our loved ones, is where we stand to lose the most. In this shared space lies the recognition of our failure to empathetically relate; in this shared space lies the failure to guarantee the transmission of how we feel. Admitting failure, or admitting our limitations, at any rate, is giving up power.

We often do not recognize this because rather than practice empathy, we slide into sympathy: “Oh, if I were leaving the house each day to go to work I’d have richer interactions with peers and not feel so burned out at home”; “If I were able to be home each day with the kids and stay up on organizing our house, I’d have much less anxiety.” These sympathetic, power-reinforcing dynamics, that fool us into thinking we understand the circumstances of another, and so have the warrant to offer advice, protect us from pain because they protect our power. But to connect empathetically, to stretch ourselves beyond sympathy and practice empathy, requires we flatten the power dynamic. Empathy acknowledges authentic communication seeks for itself vulnerability and humility.

When power is resigned, we open ourselves to pain. We may feel quieted when our voices are not heard. Our power has not been given freely. Our power has been taken from us. Powerless, we seek ways to take punitive action. We hurt and so we look to regain power through threats, angry statements, and nonverbal signals. Avoiding affection, restraining intimacy, limiting authentic communication, seeking emotional relationship with others are actions the vulnerable take to restore the power balance.

 

“I think this is the winter everything unraveled.”

I recognize that I feel powerless. I do not pretend to speak for my spouse. I’ve claimed in this post, we cannot achieve a fully empathic connection. Though I have not said a goal should not be pursued only in virtue of its far and uncertain reach, even if beyond our grasp. In other words, connecting empathetically is a goal worthy of our practice. Without claiming too much, I imagine my spouse to feel powerless, too.

Freely giving up our power, it turns out, is a powerful act. It is an expression of trust, an expression that I can share my feelings and experiences and my partner can be trusted to tease out subtle and nuanced meaning. Freely giving up power is an effective response to feeling our power is taken. Quieted. We affirm, others may affect our powerlessness, but vulnerability is an act we may attend to on our own terms.

I am powerless, vulnerable, and from this place, maybe I am prepared to achieve a greater degree of empathy.

Relationships are built on communication, verbal and otherwise, and each act of communicating is open to interpretation. We hold power foolishly when we imagine with hubris that we know what others are going through, but when we freely give our power to another, when we say, I am worried. I am hurt. I am afraid. When we stop thinking, “if I were in your shoes,” and stretch ourselves to imagine the life-world of another, that vulnerable sacrificing of power just might be the way forward.

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?

Why Disability Doesn’t Work If You Work, with Advanced Illness

The word “financial toxicity” is often used in the context of cancer care. Why is that? Here is my experience with financial instability.

 

I became eligible for disability shortly after diagnosis with glioblastoma. This diagnosis qualifies for the Social Security Administration’s list of compassionate allowance conditions, which “are a way to quickly identify diseases and other medical conditions that, by definition, meet Social Security’s standards for disability benefits.” These “conditions” facilitate expedited approval for Social Security Disability benefits. However, my claim as adjudicated by the administration deemed me to be “temporarily disabled.” I am subject to a three-year monitoring period prior to being determined “totally and permanently disabled.” This distinction is important because under temporarily disabled status, my disability benefits do not qualify as income. Without this qualification, my benefits, approximately 60% of my salary at time of disability, do not have bearing on our family’s income-to-debt ratio. Inability to qualify for a mortgage is, to date, the most detrimental impact to our family. We rent a home and pay a premium for our financial insecurity, strange as that sounds. We expend two to three hundred dollars more monthly than a mortgage for a comparable home.

 

What’s more, my earnings are “capped”: should I exceed a threshold of monthly earnings, my disability “cuts back.” That is to say, there is little incentive for me to earn income beyond this threshold, set at federal poverty level. To further complicate finances, my publicly-held student loan debt is dismissed after this three-year monitoring period, but again, should I exceed earnings beyond the annual FPL “cap,” I disqualify my eligibility for dismissal.

 

To put things plainly, if I work to my current full potential I “break even,” contrasting my increased earnings with cut back disability benefit disbursement. There is little incentive for me to earn more, unless I might earn so much that I exceed my disbursement. Earning more harms rather than helps my family. In this sense, I am disincentivized to work. It is better off for me to remain at federal poverty level. Counterintuitive.

 

The fundamental problem is this. Disability benefits, programmatically, are not designed to aid those with progressive advanced illness. True, my family required disability assistance in the months following surgery. We simply could not have lived otherwise. I was completely unable to work, suffering from the most severe of my symptoms: significant motor impairment, frequent seizures, daily headaches, daily nausea, and significant fatigue. Given the nature of my neurological deficits, during my two plus years of survivorship I have learned to mitigate symptoms through rehabilitative therapy, proactive planning, and completing my first “phase” of active treatment. I am now “recovered” enough to return to work, as I have. This recovery, though, is short-lived. Glioblastoma is a recurrent disease, and at the time of recurrence the survival median shrinks significantly. I am currently at my most “able” to work.

 

Contrast my case with others who may become disabled. Imagine an incident: work-related, vehicle crash, unforeseen accident, and so forth, these folks present with most acute trauma in the near-term and recover slowly to return to the workforce. The Social Security Trial Work Program incentivizes people to return slowly to work by suspending medical review, protecting disability disbursement during a trial work period, regardless of the income earned, with the ultimate goal of terminating disbursements after the conclusion of a trial work period. The candidate for this program is the person who is disabled today and is predicted to be able to work in the future. Here the income caps make sense, almost by default, because one may not be expected to reach full earnings potential while returning to work.

 

This is not my case.

 

My greatest earnings potential is now. Though physically and intellectually unable to maintain a full time work schedule, I am able to sustain the part-time, from-home hours as I have been, thanks to my generous and caring employer. A recent work project has demanded full use of resources from the assigned team, including me. This is a great opportunity to invest maximum hours while the work is available and pressing. Though, should I gather the energy to support in the short term to drive the project toward completion, I risk cutting back benefit disbursements and putting my publicly-held loan dismissal at risk.

 

Rather than near-term disability, with the aim to return to work, as SSD benefits and Trial to Work programs are designed, my part-time work capacity is greatest now, and cannot be counted on for more than a few months, given the nature of my progressive advanced illness.

 

Financial toxicity, a buzzword in cancer care and survivorship, is not only the rising cost of treatment and prescription drugs, the inability to work full time, or the loss of care partner income, such as a spouse who reduces hours to respond to increased care needs, it is also, or maybe it is more, about the systemic designs of our assistance programs which are poorly equipped to meet the needs of the seriously ill.

 

When my monitoring period is up after three years from the date of disability, there is only a chance I’ll still be alive to be monitored: the median survival time for glioblastoma with my particular genetic profile is 27-31 months.

 

I will likely die in the home that our family does not even own. This is the damned if you do, damned if you don’t scenario: work more, earn less; earn less, earn less. That is financial toxicity.

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.