Camp Kesem BSU Make the Magic 2019

Our family has been uplifted in so many ways by our experience with our Camp Kesem local chapter at Ball State University. Camp Kesem is a week-long summer camp for children whose parents or guardians have been affected by cancer, CK supports kids, “through and beyond a parent’s cancer.” The camp is provided at no cost to eligible children, supported by the generous donations of their national network. For this year’s annual gala, Make the Magic 2019, I was invited to share our family’s story. I delivered the following remarks on Saturday, April 13, 2019. Please consider a donation by following the link. Thank you, CK at BSU, for your love and care. xoxo ❤

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Glioblastoma. An aggressive brain cancer with a five-year survival rate of 5-8%. Abbreviated usually to its medical moniker, GBM, this cancer is so-far incurable, and sadly, treatment options are strikingly limited: only three new chemotherapeutic agents have been approved for the treatment of GBM in the past 30 years. The disease presents with a host of neurological disorders: seizures, called “tumor-associated epilepsy,” severe headaches, memory loss, confusion, often personality changes, and depending on the location of the tumor in the patient’s brain, the size of the tumor, and the side effects from surgery and radiation, other impairments can develop, for example, my left-sided sensory and motor impairment, which affects my balance, and my sense of where my body is in space, a sense called “proprioception.” This proprioceptive impairment is like a blind spot on your car’s rearview mirror. This explains why I constantly run into door frames or furniture and the one awkward time I unwittingly stood too close to a woman old enough to my grandmother in the deli line. “I thought you were my husband!” she exclaimed when I brushed against her. I was surprised as she was.

GBM is thankfully rare, affecting only three people in 100,000. When I was diagnosed in June 2016, I was 34 years old. The average age of diagnosis for GBM is 56. Our family faced a rare, life-limiting disease, and in this rare population, I fell into a smaller sub-group, 20 years younger than the average patient. For other parents or guardians diagnosed with GBM, if they fall into the average patient profile, that could mean another two decades for their children to age. Our youngest, Gideon, was only eight months old, when we received my diagnosis. Noah, two, who gave himself his camper name at the Friends and Family reunion this Spring, “Green Bean,” and our “Cheese Pizza,” who is our first camper to join the CK family was four. For our family, common to many families affected by brain cancers, educational resources are few. For a family with very young children like ours, there are practically no resources for educational tools or books. I recall our family therapist being so excited to give me a book about talking to kids about a parent’s cancer she picked up at a local meeting of this or that society. Thumbing the pages, my enthusiasm dimmed when I read, “Doctors are the good guys and can wipe out the bad guy cancer!” Not only am I not a fan of this oppositional good guy-bad guy trope, the doctors told us that I had a cancer that they couldn’t “wipe out.” Of course, the grimness of this reality is not limited to brain cancer. Breast, lung, melanoma, pancreatic, our lives are threatened by the primary cancer, and if manageable in the near term, for our entire lives the threat of “mets,” or metastasis, looms large.

This is not the end of the story, but the start of something new. Us parents and guardians diagnosed with cancer and our loved ones understand in the fear and uncertainty, we may also find tremendous joy. A source of that joy for me and Whitney are our children, the “Hayden Hooligans,” as our favorite preschool teacher dubbed them. Whitney and I shared the difficult news of my diagnosis with Isaac by treating him like a partner in my care. We empower our kids through our vulnerability. Cheese Pizza, “Cheesey,” is a smart guy. We practice seizure drills with him to know what to do if I lose consciousness while Whitney is at work. We ask our kids to help dad get a blanket and glass of water on bad days. Isaac’s school recently had a “Senior Citizens Day” for spirit week, and he used one of my adjustable canes to complement his outfit. He shuffled around the house saying, “I’m an old man.” (This is sort of a dig on me, because hey, it’s my cane, and I’m not an old man!) I joked with Isaac, “How cool, I bet the other dads don’t have canes for their kids to borrow!”

The first step in my treatment was surgery. A brain surgery called a craniotomy. My operation was an awake procedure allowing me to interact with my surgeon and follow commands. My 7cm tumor—about the diameter of a baseball—pressed and invaded my sensory motor cortex, in the right parietal lobe of my brain. I was kept awake to allow the surgeon to carefully “map” the functional areas of my brain, while removing cancerous tumor. During the operation we reached a decision point when the surgeon said to me, “it is difficult to see the ‘margins’ between tumor and healthy tissue. I can continue to remove tumor, at the risk of permanent left-sided paralysis, or we can end the procedure now, leaving tumor remaining.” After brief discussion, I replied, “I have three young kids. Permanent paralysis is not compatible with rolling around on the floor and playing with my kids. Let’s stop the operation now.” Making difficult decisions with our kids in mind is a responsibility parents and guardians with cancer know too well.

Adults are fortunate to have access to support groups, therapists, books, and often faith-based communities to process our complicated emotions. These resources are not so readily available for kids. Camp Kesem, as their mission and purpose states, “is there for children through and beyond a parent’s cancer.” Nervously approaching the campgrounds last summer on the last day of camp, Whitney and I prepared to pick up a sobbing mess of a Cheese Pizza. It was his first sleep-away camp and one of the few times Whitney and I left one of our kids for more than a long weekend. Instead, Cheesey ran over, offered a half-hug, and sprinted back to GaGa Ball. On the hour car trip home Whitney and I could barely get a word in between Isaac yelling, “Heeeeeey Burrito!” He told us all about camp and how he plans to be a counselor when he’s too old to be a camper. Tonight, we make the magic, and we do it for our kids, our source of joy in the darkness of cancer. Let’s give generously to spread this light.

 

2019 Tumor Takedown Tailgate

Join us Sunday, April 28, 2019 at Revery in Old Town Greenwood, Indiana, to raise money, awareness, and connectedness with and for the National Brain Tumor Society (NBTS)! Tickets are available now from our Eventbrite ticketing site. Tax-deductible donations can be made at any time to our NBTS event donation page.

We thank Erin Lisch from RTV6 who is serving as emcee for the event. Your general admission ticket includes live music from J. Elliott and band Free but Not Cheap, food from the Revery kitchen, including sliders, Chicago style dogs, and Italian beefs, with Tailgate sides. Also, enjoy two complementary beverages with an opportunity to purchase more, featuring Mashcraft Brewing, Central State Brewing, organic Italian wine spritz from NYC-based RAMONA, and wine provided by distributor RNDC. For dessert, grab a donut, courtesy of Jack’s Donuts.

A ticket also entitles you access to our silent auction, which includes a signed Pacers team basketball, thanks to Official Sponsor of the Pacers, Jack’s Donuts, a branded sweat suit from high-end sneaker retailer Stadium Goods, services from Hope Plumbing, swag from local soccer club, best in the midwest, Indy Eleven, distillery tours, photography packages, workout classes from 317 Fitness Studio, restaurant gift card to Morton’s courtesy of Berkshire Hathaway Indiana Realty, Sushi Boss, salon and massage certificates, artwork and more!

Stop by our Mission and Education table, where you can chat with folks directly impacted by brain tumors, and learn more about National Brain Tumor Society. Also, joining us for the first time this year is Cocktails and Chemo, a local non-profit with national reach that is focused on caring for the caregiver for those care partners who are the unsung heroes in cancer care.

Featured image, Adam Ramsey Film, who will photograph our event for the second year!

Massive thanks and applause to our gold Sponsor, two years running, the BlakeStrong Bowell Fund!

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Many thanks to our silver sponsors Stadium Goods, the Luminous Fund, Bookends Financial Planning a Raymond James Company, and Hope Plumbing.

 

And shout out to our bronze sponsor, J Dog Junk Removal.

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All event proceeds benefit the National Brain Tumor Society | $40 | 21+

To stay up to date on #TumorTakedownTailgate news, drop us your contact info!

 

 

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

Senator McCain: Living Well Until The End

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

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

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

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

 

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

 

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

 

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

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

 

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

 

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

 

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

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

 

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

 

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

 

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

 

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