Measuring Outcomes: What the Newly Diagnosed Should Know

I open this post by offering key definitions that are helpful to anyone impacted by a cancer diagnosis, directly or indirectly, which speaks to nearly half of the population of the United States. Indeed, “Approximately 38.5 percent of men and women will be diagnosed with cancer of any site at some point during their lifetime” (reference). I explain the standard metrics for monitoring cancer response to treatment, and I discuss the role of these metrics in determining the standard of care protocol. I conclude with a discussion of the cancer experience that is not so easily quantified, or captured by the established metrics. My aim is that in this article, persons relatively new to the cancer experience may find tools to better equip their journey. The National Cancer Institute (NCI) offers a similar resource on understanding cancer prognosis (here).

 

Standards of care for treating cancer—that is, the established “protocols” for how, when, in what sequence, and guidelines for determining dosage, vary by cancer type, yet for at least 50 years, the general cancer treatment program is colorfully, if not cynically, called “slash and burn,” referring to the twin procedures of surgery and radiation therapy. Or, “slash, burn, and poison,” when cytotoxic (cell-killing) chemotherapy agents are ordered following surgery and radiation. The new era of “precision medicine,” which employs highly specialized treatments engineered to target the biological characteristics of a person’s cancer, promises to discard this primitive slash, burn, and poison program, but to date, hugely successful outcomes that result from targeted therapies in trial for quite specific cancers have failed to be borne out clinically in the general cancer patient population. In short, for all the hype of precision medicine, day-to-day treatment protocols across the country maintain the status quo.

 

The aim of any treatment protocol is to offer the therapy, singularly or in combination with others, that is most likely to produce the greatest degree of therapeutic efficacy, or “disease response.” Therapeutic efficacy, disease response, is measured with sophisticated diagnostic imaging tools such as MRI, CT, or PET scans. The overarching therapy effectiveness metric for cancer types is quantified by median overall survival (OS), meaning the time after diagnosis when half the measured population has died and the other half is still living. Median progression free survival (PFS) offers a similar metric quantifying the time following diagnosis that half the population has experienced disease growth or recurrence and the other half has not. Take my case, glioblastoma, with a median OS of roughly 15 months (reference). This indicates that 15 months following diagnosis, half of the diagnosed population is no longer living, and half of the population is continuing to live. My current time since diagnosis is today (August, 2017), 15 months out, meaning statistically, half of those who were diagnosed around the same time I was have since passed away. Some died very quickly after diagnosis, and others will live three, four, five, sometimes six or eight years longer. Of course I aim to be included in those outliers showing long-term survival of five or more years.

 

Protocols are tested against current standards of care, typically in randomized control trials, to measure OS and PFS against the current medians for the standard of care. Regulatory bodies, the Food and Drug Administration (FDA) for example, approve drugs, devices, and procedures, when those therapies increases either OS or PFS for the trial population above the current standard of care, without an intolerable side effect profile, or increased toxicity. Trial therapies that perform better than current standards, or when no current standard is established, have a likely chance to be approved. Sustained improvement in key metrics over time, reported in longevity studies, meaning spanning long time frames, or meta-analyses, meaning spanning large and diverse populations, may lead to a revision or new standard of care for a cancer type that is treated by the newly approved therapy.

 

In short, the standard of care is established for umbrella categories of cancer types based on measuring the same key metrics across large populations over a long period of time. Those therapies, or combination of therapies, that maximize OS and PFS, while mitigating toxicity are selected as the ongoing standard of care.

 

The politics of drug discovery and approval involve governmental regulatory agencies, multi-billion dollar pharmaceutical industries, and culturally embedded research paradigms. That is all too much to thoughtfully discuss in this article. I will say only this: reimbursement drives the systemic treatment of cancer. Standard of care therapies are typically covered by health insurers, but many experimental treatments or so-called “off-label drugs,” that is, drugs approved in the treatment of one disease that show promise for treating other diseases but are not yet proven in randomized control trials, often are not covered by insurance. Relatedly, the genomic sequencing that is required to determine the appropriate “precision medicine” to target a person’s specific cancer variant is currently not covered by the majority of health insurers.

 

Standard of care offers patients the protocol with the statistically demonstrated best shot at long-term survival. Standard of care is also the protocol commonly covered by insurance. On its face, this is a good thing that insurance covers the standard of care for a disease, but there is at least one downside. This schema ties patient treatment options to governmental budgeting priorities and big money lobbyists. In a purely hypothesized scenario, but not one divorced from reality, if a lawmaker hears from her lobbyist from big pharma that disease X is well controlled with approved treatment Y, then the prospect to increase funding to the National Institutes of Health (NIH) may appear less pressing to the lawmaker who sees little reason to pay the big price tag of experimental research, when the lobbyist is showing their company’s success rates. This introduces a feedback loop where the government fails to fund research, insurance companies have little reason to reimburse experimental therapies, and patients are offered fewer options to explore cutting edge therapies. It is for these reasons that I advocate for increased research funding for the NIH, its subsidiary arm, the NCI, and not-for-profits, like the National Brain Tumor Society (NBTS) who equip persons affected by brain tumors to raise their voices to lawmakers who may only be hearing one side of the experimental research budgeting issue.

 

Taking stock, so far I have roughly defined key metrics put in service to monitor the effectiveness of our treatment protocols, I have explained how these metrics are used to revise standards of care, and I have revealed one issue with our reimbursement-driven healthcare system, namely, that it serves as a barrier to funding trial research. Now, I turn my attention to the experience of illness—something not easily reported by standardized metrics. To resolve this issue, patients must learn to tell their stories! The fields of medicine and pharmaceuticals are becoming more interested in something called patient reported outcomes (PRO). These PRO metrics speak to the quality of life impact given a selected treatment protocol, but constructing a narrative, with the support of friends, family, and trusted clinical practitioners, is the best way for a patient to share their experience with lawmakers and medical teams to serve as a catalyst for change—whether the change is to ask congress for budgeting priorities or frame a conversation with a patient’s clinical specialist.

 

Harnessing the power of story telling can also be a powerful tool to communicate with loved ones who struggle to know how best to respond to the illness experience.

 

I disengaged my friend group at each of three milestones in my life: first, when I started grad school, I lost friends to my study commitments; I picked up an evening job in the service industry to help care for my kids during the day, attend class in the afternoon, and bartend for income at night. Second, when my wife and I grew our family by having kids, my friends were mostly grad students and bartenders, not the most family-friendly groups, and adjusting to family life created a rift in some of these relationships; third, when I was diagnosed with aggressive and incurable brain cancer.

 

I cancel on friends often: dinner plans, concerts, hanging out to catch the Cubbies play, I cancel these plans all the time. Sometimes because I am fatigued, sometimes because I know the environment will trigger a focal seizure, or at least bring on seizure-like symptoms: left-sided numbness, light-headedness, dizziness, and headache, or for what has been the case recently, I cancel because I just want to be home, with my wife and kids nearby. Brain cancer has dynamically changed my relationship with my wife. The emotional burden we carry cannot be overstated. The metrics, the open trials, morning email bulletins from medical news outlets all twist and turn their way through my mind each day. My wife works hard in a trauma hospital to support our family, to be the only driver in our home to get each of us in our family of five to where we need to be, to carry our family’s medical benefits, and she manages our monthly budget. She and I are both exhausted. She needs more sleep than she gets. I need support from friends who understand, but with a disease incidence rate of three in 100,000 and only 5% of the diagnosed population living five years, it is difficult to find a friend locally who shares my diagnosis, and among my non-cancer friends, it is tough to find one who not only listens, but who understands. I look for emotional support from my wife, which places yet more burden on my care partner to fulfill multiple roles in my life.

 

I read, write, and research daily, fearing that I must approach my “work”—blogging, public speaking, working on a manuscript, with urgency because the course of my disease, or the effects of the treatments to control the disease, in time will negatively impact my higher level cognitive functioning. Here I am, a head full of medical knowledge, self-imposed restrictions on having pizza and beer, pretty disengaged from new music, sports news, and pop culture, and never much wanting to do anything other than do each day only those things that contribute to the big goals I set out for myself before I reach my dot on the overall survival normalization curve.

 

Practicing how we construct our stories to communicate these emotions, decisions, and reactions in a way to inform our friends and family and not alienate them is an acquired skill that will take each person impacted by a cancer diagnosis, directly or indirectly, some time to cultivate. It is my hope that equipped with the language in this article, and the glimpse into my personal experience, you may find your attention to these issues more focused.

Making Sense of the Senseless

A classic sketch featuring Dana Carvey as Tom Brokaw aired on Saturday Night Live in 1996. The comedic premise has Brokaw (Carvey) pre-taping former President Gerald Ford obituaries to “cover all contingencies,” while Brokaw prepares to spend the winter in Barbados, presumably then unavailable to cover breaking news. Brokaw is reporting the fictional/possible “Gerald Ford shot dead” story, when his producer prompts Brokaw to include the word “senseless” (marker 1:10 in the linked video). Brokaw reports, “Gerald Ford shot dead today at the senseless age of 83”; the crowd erupts in laughter.

Of course it’s not the age of former President Ford that is senseless, but his assassination. This post is not on the mechanics of humor, but there is something instructive about this joke, grounded in what we mean by “senseless.” President Ford’s age is easily accounted for, and not something arbitrarily assigned to the President. Indeed, we could verify the President’s age by examining evidence such as the year recorded on his birth certificate. What we could not account for are the motives, thoughts, and attitudes of the imagined assassin. Hence, it is appropriate to say, “shot dead, senselessly,” rather than, “senseless age of 83.” Brokaw’s inappropriate insertion of “senseless” upon the producer’s request plays as a joke about language and about the “thoughtless anchor” trope, who only reads the prompter but, in some sense, does not know what they are saying. (For another salient example, see Will Ferrell’s Ron Burgundy in Anchorman, “Go fuck yourself, San Diego,”)

Senselessness in the context of Carvey’s Brokaw cashes out as some feature of an event or thing that we cannot account for. It is inexplicable. It confounds us. It is senseless. Someone’s reported age is not senseless. The unlikely assassination of a former President is senseless. Let this be a stand-in definition for ‘senseless’: something for which an account cannot be given. Hopefully I have provided adequate motivation to pick up this concept and apply it. Regardless, nothing all that important turns on the definition we settle on for ‘senseless.’

My loved ones identify senselessness in my glioblastoma diagnosis. There is no known cause for glioblastoma. There is no known cure for glioblastoma. This characterizes the disease as a double whammy: no prevention and no cure; utterly senseless. Adam was diagnosed with glioblastoma at the senseless age of 34.

Fortunately, we are not doomed to senselessness. We can see our way out of it by appeal to a recurring theme on my blog: narrative medicine.

Read the following description of one responsibility of clinical practice from Arthur Kleinman, quoted in Dr. DasGupta and Dr. Charon’s article on personal illness narratives[1]: “Rather than technical adherence to any strict format of history taking, empathetic witnessing involves ‘the existential commitment to be with the sick person and to facilitate his or her building of an illness narrative that will make sense of and give value to the experience'” [emphasis added].

Kleinman’s claim, endorsed by Drs. DasGupta and Charon, prescribes that clinicians are assigned the task of helping persons under their care to construct their narratives, that is, to tell their stories, and in so doing, to find sense in the circumstances and by some measure render the experience valuable.

I floated an analysis of ‘senseless’ to be an event or thing that cannot be accounted for. If you get on board with that definition, then making sense, as Kleinman orders, of the senseless, involves giving an account for one’s circumstances. Easily done, maybe, when you pick out your own agency in a circumstance, but with so many cancers generally, and glioblastoma, particularly, there is no accounting for the disease and no role for personal agency. Personal agency features heavily in our acceptance and moving forward with the diagnosis, but causally, pre-diagnosis, there was nothing I could have done to prevent my brain cancer; this is what I mean by no role for agency. The circumstance seemingly remains senseless. Is there another interpretation on offer? I suggest an alternative.

Rather than seek meaning in the senseless, a Sisyphean task, as I have said, there is no accounting for glioblastoma, what if I were to recast the circumstances in a new way, not as Adam with brain cancer that has no cause and is thereby senseless, but let us examine the outcome, when I interpret the circumstances as Adam, the graduate-trained philosopher, nearly ten years of experience training, consulting, and facilitating organizational change management in professional settings, with a supportive family, a strong social network, and relatively unimpaired cognitive functioning relative to this stage of his disease, save for his neuro-fatigue, seizures, headaches, frequent breaks, etc. On this revised reading of my circumstances, I have done nothing to change the constants that are included in the story–I still have brain cancer; there still is no cure, but I recast the circumstances in such a way to mitigate the threat of those things for which we cannot account.

There is no accounting for glioblastoma, or my having the disease, that is all senseless, confounding, inexplicable, but there is a way to tell my story, to construct my narrative, that makes sense of things, or at least better sense of them than I possessed pre-reflectively. I repeat for emphasis: I recast the circumstances in a way that made sense, in such a manner to mitigate the threat of those constants that are senseless. We may infer from Kleinman’s direction that making sense aids the storyteller in finding value in the experience. What I have done here in a few short paragraphs that reflect my many months wrestling with my disease, is to set aside those things for which I cannot make sense. I allow the disease, and my having it, to be senseless, but as Kleinman orders, I can make sense of and find value in the experience. More accurately: I distinguished the particulars that make up the experience from the experience itself. Some facets of my experience, the cause of glioblastoma, for example, are senseless, but my illness experience is much, much greater than the diagnosis.

I penned an open letter to Senator John McCain last week, on the heels of his glioblastoma diagnosis. I received countless article comments, tweets, and emails. One email related the story of a person whose dad died from glioblastoma when this person was still a child, only 12 years old, too young to understand the complexities and difficulties of daily living with brain cancer. This person, then child, emailed to tell me that my letter of advice and support to the Senator helped this person to better understand what life was like for that person’s father. By constructing my narrative in new lights, lights seeking to shine brightly on the experience that can be made sense of, allowing the senseless particulars to remain as part of the experience, but their threat mitigated, I found value in my experience by sharing my story with others.

We find sage advice at the intersection of comedy and medicine. Unsurprisingly. These both are unique expressions of humanity. Comedy and medicine are experiences far greater than the particulars that make them up.

Clinicians and professionals aid a person in crafting their narrative with the purpose of distinguishing those things for which we cannot account from the experience itself, when performed successfully, sense can be made of the senseless, and value can be found in the experience, even an illness experience, but just like comedy, we get better with practice.

 

[1] DasGupta, Sayantani, and Rita Charon. “Personal illness narratives: using reflective writing to teach empathy.” Academic Medicine 79, no. 4 (2004): 351-356.

Grieving the Life that Is Not; Accepting What Could Be

In this post I examine my deep sadness, and I find it grounded in the notion that I grieve the life that is not: not the life that I live now, but the life that could have been, if I pursued another path, but did not, and so I grieve the loss of that life that is not; not what is, but what could be. Grieving has manifested with great sadness, but by the end of this post I find my way toward new possibilities grounded in acceptance.

On its face, one would think grieving a devastating medical diagnosis (c71.3) would manifest sadness involving the future loss of one’s life that he is accustomed to living and the attendant worries about his spouse, their children, family, friends, relatives, coworkers, and so on. We fear our deaths, and we fear how others will fare after our passing, and so it is reasonable to guess that we grieve the loss of our actual lives, as they exist today. This is grieving the life that is.

Surprisingly, I grieve the loss of my life as it could be, what I have called, the life that is not. I grieve the many possible lives that could be mine, or could have been, but now fold under the faculty of imagination. I stand only to lose the life that I lead today. Most generously, the life I could live in five or six years time, which significantly limits the range of possibilities that once were.

I acknowledge this grief is self-centered, and I offer little defense of this perspective other than to gesture toward the careful end of life planning and estate documents I have prepared with my wife, the commitment I have made to my children to seek happy moments for memory-building each day–difficult as those moments are to find some days, and to remind myself and others that my motivation toward writing, speaking, and meeting with researchers, clinicians, and those in training, is to leverage my experience in service of benefitting other patients who face their own grieving for the loss of what could be, but is not.

Quantum mechanics describes a wave function. The wave function describes probable positions of theoretical constituents of a quantum system where the exact position of entities cannot be determined, or predicted, without taking a measurement. This is a very sloppy summary, but it is helpful. Stay with me.

In more plain language, by way of example, here is a picture of physics pre-quantum revolution. We could take the initial conditions of a baseball duel between pitcher and batter, accounting for pitch speed, bat speed, ball spin, pitch trajectory, initial moment of impact, and so on, using classical mechanics, a physicist may derive an accurate prediction of exit velocity, trajectory, and distance travelled of the ball leaving the bat. The physicist could say, “here is where the ball will land,” and we could find the ball actually landed in just that spot.

Classical mechanics, though fraught with some intractable problems, is elegant because the theory space between what is predicted and what is actual, is narrow. Given a complete set of initial conditions, classical mechanics could predict the past and future universe. All of it. The first grand system to unify earthly and cosmic phenomena. Think of the scope, power, and satisfaction of theoreticians working in this domain! Little in a classical system is left to uncertainty. The world is determined.

In the quantum system, we no longer have bats and balls. There are instead theoretical entities such as electrons, which are very little like a ball as we conceive of the term, but are “smudges” in spacetime that can never be fully accounted for. The physicist instead accounts for the electron’s position by way of a wave function, a mathematical prediction of the many possible locations of an electron. A measurement can be taken to more accurately define the position of the electron; once the measurement is taken, the wave function, the description of possible locations, ‘collapses.’ The quantum system is uncertain, its theoretical picture of the world is unverifiable, if we take verification to be something we “see” with our eyes, and not merely detection by computerized instruments. Einstein famously resisted adoption of the quantum world finding it to be too indeterminate.

My life no longer resides in the determinate world of classical mechanics. I am an uncertain entity defined by statistical possibilities.

I grieve the approaching collapse of my wave function.

I accompany Whitney to work each Wednesday. She treats patients admitted to the hospital. I sit outside of the Starbucks, drinking coffee, reading, and writing. This is my favorite activity because it places me in the presence of surgeons, oncologists, internal medicine physicians, radiologists, nurses, therapists, and medical students.

I eavesdrop on conversations about rounds and residents. I discern what the med students are studying by listening closely to their peer-to-peer flash card quizzes. I listen for terminology that I may be able to define.

On pains of extending a metaphor beyond its usefulness, I imagine a possible world where I became a surgeon to resect my tumor, not the patient. That wave function has collapsed on my present location, outside of the Starbucks, jeans and flannel shirt, not in scrubs and gowns, stethoscope tasseled around my neck, leading the cadre of residents into the operating room.

Naturally people often ask me how I am doing. “I am doing well,” I say, “I am rebounding from my last chemo round, and my energy is coming back.” Of course this is a superficial response to a superficial question, but it is how we get along in the world, interacting with others, prioritizing politeness over candor for the sake of cooperative living, and insofar as I tend toward politeness, I have few complaints with these social norms.

Though should I be candid.

I am very, very sad.

I am not sad for losing my actual life–the life that is. My wife is strong, my kids are emotionally mature, our extended families are active in our lives, our communities of support share our values, our life insurance policies, college funds, and savings accounts will not support my family indefinitely, but all will be well beyond my passing. There is sadness here, but there is also my supreme confidence that Whitney, with an army of support behind her, will see our kids through, toward successful lives, relationships, and children of their own.

When I reflect on my deep sadness, I find this feeling grounded in the loss of the life that could have been, but is not. The range of possibilities narrow more each day. I stick my nose into medical journals and pre-med text books in a naive and misguided pursuit of theories and terminology that at some future time I apply to a school of medicine. I yearn for a career in medicine. We have terrific accounts of physicians turned patient, why not patient turned physician, I wonder. To dwell more on this failing and naive hope for the future is to further exaggerate the life that is not, proportional, if not causally connected, to my deep sadness. The determinate and certain classical world is now overthrown by the uncertain predictions of statistical probabilities.

Friends, as I take myself to be in the presence of narrowing possibilities, sitting outside of the hospital Starbucks, know that I am pressing myself to learn more, to work harder, to meet more clinicians, to schedule more speaking events. Grieving is a process toward acceptance, and acceptance of a current state is a measurement taken. With new data in hand, perhaps it is time to revise my initial conditions and be open to a refreshed range of possibilities that exist in this new reality of not what is, but instead, what could be.

A Declaration (Classification) of (Modified) Independence

Tonight I was crushed at freeze tag by a pre-teen, two children, and a peer. I mean crushed. My five and half year old was unfreezing me as needed, and when I was “it,” my three year old was my only active target. I had the head drop to juke left, but no spring off my left foot to jolt back right. I tried to spin away from an incoming freeze tag, and I aimlessly hopped on my strong right foot, down our slightly declining back yard.

I declared victory, anyway.

Not because my house, my rules.

No. Instead–well, if you have heard me speak in the past several months, refining and sharpening my illness narrative, you know the climax of my awake craniotomy and surgical resection to debulk a 71mm primary brain tumor included the adjudication of a life-altering decision to either press on with aggressive surgery at the risk of left-sided paralysis, or remain conservative, protecting sensory motor function with impairment, leaving remaining tumor in the margins of my surgical cavity.  I decided to pursue a more conservative resection, on grounds of my young family–three boys under five years old, and our (necessarily) active lifestyle. This decision was made while on the operating table, skull opened, my inner emotional and physical life exposed, if there is a distinction to be made.

Tonight I tossed my cane aside. I ran (I mean, sort of ran. Ran-ish) with my boys, their cousins, my brother in law. My awkward gait pounded my feet into the hard summer soil of an Indiana summer through the flat soles of the Sambas I used to wear for ollies and standing for hours at local concerts (“shows”).

My neurosurgeon told me to make my decision based on my quality of life today, not what I imagine could be the case in the future. My decision ultimately was to maintain what function I had left after a huge tumor smashed my right ventricle, motor sensory cortex, and post-central gyrus. I took this bet to leave cancer in my head and rolled the dice for research oncology to save my life while I hobbled after my boys outside during the slowest-paced game of freeze tag that’s ever been played.

Anyway, it’s July 4th, and that is my declaration of independence. My quality of life is better for it–shorter maybe, but for tonight, anyway, better.

The Illness Experience

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

Not much drinking these days.

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

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

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

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

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

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

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

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

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

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

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

His son died the following week.

 

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

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

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

I sobbed. Whitney and I, silent.

 

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

“Remember?”

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

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

“You ready?” Whitney asks. I nod.

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

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

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

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

I think of my own road ahead.

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

“You OK? Whitney asks. I nod.

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

I nod. I sob.

On Being a Mascot

“I do not want to be the cancer mascot,” I naively said a few days after awake brain surgery (craniotomy and tumor resection/debulking). Cards, balloons, social media posts, and visits from friends and family weighed heavily on my badly bruised, traumatized, and swelling brain. In this post I reflect on my journey, one year on.

The trauma of brain surgery is so significant that now, one year later, my MRI scans continue to show post-surgical changes. The brain tissue that is my parietal lobe is shifting posteriorly toward the occipital horn. The worst news we could receive following an MRI is tumor progression (growth), and so far there are no signs of this progression. The scans are “stable.” Stable is terrific! And stable can also be misleading. Regardless of stable tumor/disease status, each scan reveals new swelling, shifting tissues, blood flow abnormalities, developing and decreasing fluid pockets. These are occurring with my brain tissue all the time. The brain is the organ that is most easy to damage and most difficult to heal.

I often forget, and this lesson is lost on many, that I have brain damage. It is with deep, deep breaths of relief that I am yet to experience any outward-facing language or higher-level cognitive deficits, but when I am critical of myself, when I am frustrated with my inability to effortlessly walk, feel, sense, or shift weight or pivot toward my left side; when I am depressed to wake up with yet another headache, when I have to cancel dinner with friends because of fatigue, I remind myself that, after all, I do have brain damage.

My surgery was one year ago, to the day, May 26, 2016, prior to me sitting down to pen this blog post today, on May 26, 2017. One year ago in May, 2016, I hesitated sharing too much of my story for fear that I would alienate friends, drive people away who lack the desire, emotional wherewithal, or open-mindedness to join hands with their friend Adam, a former grad student, a recent bartender, a new dad to young children, who now lay in a hospital bed, his head bandaged, his left arm and leg weak and flaccid; someone who requires a visitor badge to spend time with. A 35 year old young, bearded, indie rock dad who was diagnosed with an incurable brain cancer, which typically affects people, mostly men, in their 50s and 60s, not their 30s.

“I do not want to be the cancer mascot.”

I had over 40 staples in my head, I was stuck in a hospital bed or a wheelchair, and nurses popped in and out of my room every twenty minutes to take vitals, or administer meds, change the IV drip, or measure the amount of urine I was evacuating. I exemplified a hospital patient. There was no choice but to be a mascot because I was dressed in it, bathed in it, immersed in it.

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Adam in hospital recovery room, bandages off, the hair part from the staples, May 2016.

I was a cancer mascot. What would I represent?

I saw your head tilts, your furrowed brows, your smiles, turned down at the corners. I watched donations pour in to sustain our family and keep our financial heads above water while swallowing the pride, informed by societal norms, that a husband and father should provide for his family. Please know that our community of friends near and far, loved ones and strangers, classmates and coworkers, we could not be emotionally, financially, or physically stable as we are without your support!

May, 2016, I stared out the window to look onto the busy world, sobbing with my wife. May, 2017, still staring out the window, and still sobbing with my wife, but not as often. I embrace my role. I am a mascot! I am fortunate to have the strength, the cognitive processing power, an articulate nature, and above all, a supportive network of family and friends to embrace my role.

Proudly, even.

A fundraiser was organized for our family, with permission, but we had no involvement in scheduling, planning, advertising, or organizing for the event. When we were informed a couple weeks ago of the planned date for this fundraiser, and that it would take place, tonight, May 26, 2017, Whitney and I looked at each other, smiled, and released our wet eyes. What more can be done on the one year anniversary recognizing your life forever there after would never ever be the same again? We said “great, it will be an anniversary party.” We have chosen to embrace our new life, to try our very best to share with the world, led by honesty, vulnerability, and speaking in unison with the voices of other survivors, accompanying them, another voice in the choir.

I didn’t want to be the cancer mascot because I feared it would strip me of my identity. What I have learned this year is that personal identity is not static and unchanging. We are adaptable. We learn, grow, evolve, fail, sob, rally, and push on. Somewhere in there we locate our values, and finding bedrock in what is most important frees us of fear that we will become something we do not want to be, and instead helps to be who we are, regardless of circumstance.

I didn’t want to be the cancer mascot because I didn’t know what I was representing, what values would shine through, what a symbolic exemplar of cancer would portray to the world, and today I have a little more insight into the symbolic representation of a terrible disease that touches, through direct diagnosis or diagnosis of a friend or loved one, one in every two Americans. What we need is honesty, vulnerability, passion, and a willingness to embrace our challenges.

Each day is not easy. I am an ass sometimes. My curated life through this blog and social media is not designed to disguise my bad days and hard times, but instead, I seek to demonstrate the power one person has in representing something bigger than they are. We are all cheering each other on, and embracing our shared encouragement is the role of a mascot.

What mascot can you be for the people in your life? What do you seek to represent?

Happy anniversary, and cheers!

 

Visible Scars; Invisible Diseases

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

I feel guilty that I am not more sick.

That is a strange emotion, isn’t it?

I feel guilty that I am not more sick.

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

Yet, the sentiment remains.

I feel guilty that I am not more sick.

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

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

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

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

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

 

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

And for many, it is. 

But for me?

I do not look this way at all.

Instead.

I feel guilty that I am not more sick.

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

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

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

I am guilty that I am not more sick.

 

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

 

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

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

I am guilty that I am not more sick.

 

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

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

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

 

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

I am guilty that I am not more sick.

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

Still. 

I feel guilty that I am not more sick.

 

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

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

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