This post is dedicated to my dear friend Jessica Morris. Rest in power, Jess. xx
I came into brain cancer in a very curious place: Young, otherwise healthy, finally getting my shit together, and seeing on the horizon an opening onto new vistas of possibility. The enthusiasm for that moment in time – life suspended above the turbulent waters that cancer churned – held acceptance of the diagnosis at arm’s length. Like the musical notation on the bass clef that anchored a song while the melody wormed its way into your ears and animated the feet beneath your beating heart, my confidence in the rhythm of fresh and new opportunities rooted my life in an optimism that the gasp of a cancer diagnosis could not quiet.
The melody of daily life crescendoed to frantic staccato notes while my body moved from scan to scan exposed to needle sticks, scalpel, and blood, but the bass hit on the quarter notes and kept me marching forward. I was of two songs; two lives. A stable life where I was a spouse, a young dad, a grad student. Another life was born in an exam room: “I regret to inform you that you have a brain tumor.” The optimism of the former life proved recalcitrant in the face of the latter. Neither story would be subsumed under the other.
Our songs, our stories, they are ourselves, our narrative identities, and for now, my life told these two stories. One story sang of hope and the other lamented hope’s loss. In the in-between space, a vacuum of meaning and a dearth of certainty; there was fear, but the antidote to fear is information, and the pursuit of information in inquiry.
The devastation of a brain tumor could not overcome the earnestness with which I pursued the science of the damn thing; the inquiry; the curiosity. And so here I was in a very curious place: Still hopeful. Still optimistic. But dying (so they said). But rather than let the virtue of curiosity dissolve into a fool’s errand, I dove into my disease, armed with inquiry, in pursuit of information, the antidote to fear.
All areas of life were fresh: only a few years married, young kids, a new job, the end of grad school, and even brain cancer was fresh. It was new territory, a rare disease, strange seizures, side effects, and cytotoxicity. For a hungry mind, I feasted on the fresh information.
Part of surviving a disease, part of being a patient, is becoming the expert in the lived experience of your illness. The mechanisms of action sit in the petri dishes and textbooks but the experience can’t be recapitulated in the lab.
Over time, the new experiences become old experiences, and the monotony of a life under medical management becomes routine. It’s no longer hopeful, nor optimistic, nor fresh, nor whatever else, but instead, life is a long, protracted chore that must be endured. There are no more surprises, only symptom burden, and without surprise, there is suffering.
Five years is my landmark.
I’ve lost the rhythm and life has been writing the melody. It is common in our community to hear of internet friends, friends of friends, and distant friends die, but this year I’ve lost three personal friends; brain cancer friends. What if what was fresh has rotted? And the devastating disease is putrid flesh decomposing on the skeleton of reality where hope once lived. Could the once unimaginable achievement five years ago of celebrating this half-decade milestone with a cold beer and a few tacos be the song’s end? Would life be devoid of surprise from here on out, and only suffering remain?
But what if things may be made new all over again?
In just twelve months time I will be six years post GBM diagnosis. If only 5% of us make it this far, what good does it do to the 95% if I don’t continue to report from the front lines of illness? I am a journalist deployed to a new world that tragically few know.
I am a voice who now embarks on their sixth year of survivorship.
I come into the realm of survivorship in a curious place: An expert in the lived experience of my illness, but not yet an expert in the geography of long term survivorship. You and me readers, we figured out the first five years together, and now we are cartographers on a more grave mission, to chart the course from years six through ten.
Do you hear it? It’s that rhythm; song, dance, and story. I see on the horizon new vistas of possibility.
On May 13, 2016, Adam was ordered to a “stat” MRI by his primary care provider. The scan revealed a 71mm primary brain tumor that would be diagnosed as glioblastoma multiforme (GBM), a deadly and aggressive brain cancer. In this talk Adam shares his journey (so far) with GBM, and he highlights lessons that are applicable to everyone.
Glioblastoma is an aggressive brain cancer that affects mostly 50 and 60 year olds; though the disease is not restricted by age. High grade gliomas are present in all ages, from children to young adults, 30-somethings like me, and those decades older than I am. I started a journal the day that I went in for the MRI scan that revealed my primary brain tumor; I journaled the days before my craniotomy and tumor resection; I journaled in the days following my awake brain surgery. I recorded my thoughts the evening after receiving the diagnosis of glioblastoma multiforme (GBM), a killer that takes the majority of patient lives a year and half following diagnosis. I journaled my way through acute inpatient rehabilitation, and my journal is the basis of the blog I started after hospital discharge.
In this public talk on March 5, join me for an hour long immersion into my personal walk with brain cancer. I bring to light many of the anecdotes, emotions, lessons, and punch lines that so far have only existed inside my head.
Where Do I Find Event Details?
Many of you have responded with excitement for my first public talk I am sharing on Sunday, March 5, 2015, 3:30pm-4:30pm on the south side of Indianapolis. In this post I wanted to hit a few of the highlights that are coming together as we plan for the event. Following these quick-hits highlight is a high-level agenda describing how our afternoon together will be spent. Here is a link to the public Facebook event page. If you have not done so, click GOING if you can make it in person. That will help advertise the event, and aid our planners with room set up.
Interest has been immense, humbling, and exhilarating. I have friends from healthcare, academia, food service industry, personal friends, and the faith community showing interest. I cannot wait for us to rally together from so many different paths. Following my talk we will have light snacks and time to connect.
For my friends with young kids. Please join us. CHILDCARE IS OFFERED. Email your kiddo headcount with ages to event planner Lindsay by March 1 to help lock in the right number of sitters.
I know several of interested folks cannot attend in person. The event will be broadcast on Facebook Live from my personal page. Feel free to “follow” me on Facebook to see my posts and live broadcasts.
Following the event the video will be posted to this blog.
The agenda is built around two main ideas: first, that we are a community of friends, patients, caregivers, and professionals, and we all have stories within us to learn from given the chance to share. Second, it is our relationships that sustain us through times, good and bad. The agenda reflects these ideas of story telling and connection.
3:00pm, doors unlocked to check out silent auction items. Adam and Whitney will be hanging around to greet friends and chat before the talk is underway.
3:30pm, Whitney, my best friend and wife, will applaud a few key people for their help. She will cover a few housekeeping items, and introduce me.
3:35pm, I will take the stage and share my personal walk with brain cancer. The talk should last around 30-40 minutes.
4:05pm, I will field Q&A from those gathered in attendance. I am a fun medical case because I have managed to endure this battle so far with little cognitive impairment. I have much to say, and I want to do my best to address your questions.
4:20pm, silent auction winners are announced.
4:30pm, light refreshments are available and Adam and Whitney hope to chat with folks one on one who can stick around.
One of the most valuable communities to me has been the #BTSM (Brain Tumor Social Media) Twitter-based/online community. Despite our geographic and often demographic separation, our shoulder-to-shoulder battle to survive brain cancer connects us.
Instragram pictures, Facebook posts, and tweets are welcomed and encouraged from anyone attending the event or helping us with coverage. Please post using the hashtags #BTSM #GLIOBLASTOLOGY and #AandWTumorTakedown
Please reach out with any questions you have! I can’t wait to see you on March 5.
“C – A – N – C – E – R” my wife often spells the word when our kids are around. The idea maybe is that to name something is to give it power.
Beetlejuice. Beetlejuice. Beetlejuice.
Or maybe she hopes to avoid the inevitable question, “What’s cancer, mommy?” Worse yet, Isaac may tell friends, “daddy has cancer,” and no telling where that conversation leads in a school classroom full of five year olds.
Lessons for Kids and The Rest of Us, Too
Whitney and I do our best to communicate with the kids openly, honestly, and with integrity. Whitney and I have been up front with our kids that “daddy has a boo boo on his brain that the doctors are trying to fix.” Isaac and the younger boys visited me in the hospital and later in the acute inpatient rehab facility following my surgery. Cancer aside, the double-digit number of staples in my head was frightening enough–especially for toddlers who aren’t conceptualizing the silent killer of malignant cell proliferation. In a flash of parental clarity, I reminded Isaac of his many scrapes and bruises suffered to his knees and elbows following rambunctious play or tripping on the sidewalk.
I asked Issac, “Did it bleed?”
“Are the scrapes there now?”
“Did the scabs heal?”
The boo boo on daddy’s head is healing, too.”
Isaac visited me again a week or so later and he showed me his knee, bruise-, scratch-, scrape-, and scab-free. Lightbulb. The kid gets it. I showed him my staples.
What lessons does a parent take away from this brief interaction with his son? What lessons are available for the rest of us? I think it is the following: I managed to normalize a scary and intimidating situation for Isaac. Isaac understood, in that moment, anyway, that pain, injury, and healing are familiar experiences, something he can recall, and those experiences are shared by others, too. Dad looks scary, he is in a strange place, he has a visible injury, but even if the place is unfamiliar, the experience in broad view is normal: scrapes, cuts, bruises, bangs, dings, bumps, and band aids. Let the healing occur.
“Look at my knee, daddy! It’s all better.”
Empathy and Normalization
Our empathy is hard-wired from our great ape ancestors: in a very real sense we feel the pain of others, and our ability to contextualize, to see ourselves in the situation of another, represents an evolutionary advantage in so far as cooperation, problem solving, and social development rest on a foundation of finding threads that connect our experiences to the experiences of another, even if we have not faced their specific challenges. We think of ourselves as good spouses, good friends, good legislators, good faith leaders, good mentors, Big Sisters and Big Brothers, Rabbis, and Imams, Doctors and Nurses, because we imagine ourselves into the circumstances of our community, our cities, our classrooms, congregations, and hospital beds. Patient-centered doctors facilitate a role-reversal: they empower patients to take an active role in their treatment and recovery by answering the big question when prescribing medicine or writing orders: why? When patients view themselves as members of their medical team, these empowered patients contextualize their experience in following a treatment regimen to the doctor’s experience in prescribing one. The doctor and the patient are both sharing in the message of why a therapy is important. I call on doctors to explain to patients why a treatment strategy or plan of care is important in such a way that the patient is empowered to explain the same information to her family or friends. A doctor’s one-on-one communication with a patient is equipping the patient to have the same conversation with her loved ones. It is not one-on-one, but doctor-to-patient communication is one-to-many. How might a doctor’s communication with a patient change if she realizes the conversation is not only to inform the patient but equip the patient to inform others?
Good doctors and empowered patients walk (or roll, scoot, transfer, gait belt, etc.) together. It is a partnership.
My scalp itches and burns. It’s my electric cancer hat.
To maximize therapeutic efficacy, patients are instructed to meet a ‘compliance’ threshold for wearing the device. Compliance is a recommended 18 hours of daily use, but my oncologist (and clinical data) suggests that longer duration of daily use translates to increased therapeutic efficacy. The system includes an adapter for wall-outlet power and a 2 1/2 pound backpack (when loaded with the device and a battery) for getting around or out of the house.
The device is wired to a medical-grade adhesive holding multiple series of ‘transducer arrays’ that emit alternating electric fields, targeting a solid mass tumor. The electric fields disrupt the process of cellular division (mitosis). Maintenance requires patients change the arrays every two to three days, depending on a number of variables. Optune is FDA-approved for glioblastoma, so I presuppose this application in the remainder of this post, but TTFields are currently in clinical trial for brain metastasis (#bcmets) and mesothelioma. I change my arrays more often because, no secret to many of you, my super power is growing hair. The arrays must be in contact with a shaved scalp, and hair growth can interfere with array-to-scalp contact, causing hot spots, and disrupting therapy. When I stretch the arrays out to three days without a change, my rapidly growing hair causes the arrays to lose contact with a freshly-shaved scalp, and the device ‘alarms’ (*beep beep beep*)–not great for uninterrupted sleep. So it’s every other day for me that I remove the adhesive and arrays, treat my irritated scalp with shea butter, hang out, feeling liberated for a couple of hours, then shower, scrub my scalp, shave, and Whitney applies a new set of arrays. This is our routine. It has been more difficult for me to adjust to than I imagined it would be. It may not be too hard to understand why.
I nearly abandoned the Optune effort, but what I have failed to recognize until just a day or so ago is that I have not answered for myself why it is important I follow through with this therapy. There are at least three reasons, the first of which is obvious, and the latter two are consistent with the themes of this blog.
First, clinical trial suggests newly diagnosed glioblastoma patients experience an increase in overall survival with Optune compared to standard of care (SOC) alone.
Second, I am a pioneer in a new treatment modality. Yes, Optune is FDA approved and is frequently becoming another SOC protocol in the treatment of GBM (resection + radiotherapy + chemo + Optune), but we are early in discovering the wide ranging applicability of TTFields in the treatment of solid mass tumors. It is exciting to consider myself a partner in this new frontier for treatment.
Third, as a novel therapy, it is patient responsibility to help push cultural norms to improve the experience for future patients. Normalizing the wearing of Optune allows me to confront uncomfortable or strange interactions in public so that the next GBM patient may walk through the restaurant, car dealership, kids’ preschool, or grocery store without feeling the weight of quite so many eyes.
Like Isaac’s skinned knee, the staples that were in my head, and now Optune, I am wearing my cancer. It is easy to hide behind the visuals that project our pain to the world, yet we all realize, don’t we, that these are superficial and cosmetic; the tips of the icebergs. We, each of us, carry pain, heartbreak, embarrassment, fears, and injury, just below the surface, not in the light of day, exposed for the wandering eyes and strange looks from others. I think ultimately I wear Optune because I am coming to understand the act of wearing the device expresses solidarity with all of us facing hot heads, heavy bags, and restricted movements: our jobs, our relationships, our budgets, our health. It’s tough out there, friends.
I become irritable, itchy, hot-tempered, and worn out. I get short with the kids. But I also get this strange pass, right? Because of the Big C. Because of C – A – N -C – E – R. Because of Optune,and my affected gait, and my cane.
Many of you have thanked me for writing this blog, and you have said wonderful things about me and my experience: that I am inspiring, uplifting, strong, positive, and courageous. Friends, you are these things. I have been branded with the global identifier of cancer. I get head tilts and sad eyes. People are soft on me by default. The model I am living up to is the one set by all of you, who face an often mean world, and you do it with enough grace and kindness that at the end of your long days you have enough energy left to send my family a card.
We imagine ourselves into each other’s context, and we find empathy, strength, and partnership in that shared space. The analogies I draw from my experience and the lessons I galvanize show up in meaningful ways: this blog, like my description of doctor-patient communication, is not one-on-one, but one-to-many. I seek opportunities to tell my story, and I could not be more thankful for your support. More to come!
I framed Glioblastology with an insight from the 20th century French existentialist Maurice Mearleau-Ponty, grounding our mental and emotional states in our bodies and biology. The identification of our “self” with our bodies shapes the framework through which I share content with you. It is our bodies, broken and dependent on others, which we must acknowledge are central to patient-centered healthcare, placing the person first, before the doctor, before the treatment, before the diagnosis. Our diagnoses do not define us nor supersede us, as persons; yet, neither do they exist independently from what makes each of us unique. We only are our bodies; our conditions and states, symptoms, and feelings are biological phenomena perceived through our experiences.
This is my take, anyway, from an amateur existentialist. My interpretation of the existential framework asserts centrally that a ‘self’ exists in the experiences emerging from our biological foundation. Primary to the existentialist program is the claim that the emergent ‘self’ is not distinct from the body: “I am my body.”
We may also be informed by the Cartesian model of duality. That is, two things exist from which the ‘self’ is derived: there is a body and there is a thinking thing. I played with the famous claim, ‘I think therefore I am,’ suggesting that to cease thinking is to cease being. It’s my intuition that pre-reflectively, many of us understand ourselves by this Cartesian, dualist framework. I suspect a good number of folks have something like the following in mind. There is a body that ‘I’ have, and there is a pilot (‘I’ or ‘me’) at the helm, in the center of our thoughts, charting the course through our lives.
These are competing views. On the one hand, the existentialist claims that there are biological processes that are responsible for our felt experiences that we naturally refer to as the ‘self,’ and say, ‘I experience,’ and ‘I feel.’ Yet this talk of I, me, and self is strictly talk of our bodies and biological processes. On the other hand, the dualist suggests that biology carries on concurrently with our thinking and decision-making, in virtue of the free choice of our will, exercised by our pilot-minds. On this latter view, bodies and minds are connected in important ways, yet distinct. There is a body we have, and there is this mind that we have.
The question we are invited to consider is whether we are our bodies, only, our bodies and minds, working in concert, or only our minds, churning thoughts. Whether we can answer this question, at all, is the stuff of philosophy, psychology, cognitive science, and molecular biology. A more poignant question to consider today is what bearing our attitudes towards this question has on our suffering and illness; treatment and recovery.
Our Notion of Patient Empowerment Evolves Yet Again
My attitude is that patient empowerment calls to action both medical teams and patients to find common ground in asking why? Why is this the accepted origin theory of the disease expressed by my diagnosis or pathology? Why is this treatment regimen prescribed for this diagnosis? This attitude suggests that we must treat the person, the ‘self,’ to effectively treat the body. That the road to treatment and recovery is paved with patient empowerment, facilitated through the open exchange of knowledge. This is captured in my opening remarks that we, as persons, are not distinct from diagnoses, and neither are we superseded by them. Our individual conditions make us unique, but our common bodies that we should be affected by having diagnoses with biological underpinnings, unites us all as persons, and our intellectual acknowledgement of this fact relies for its comprehension on the very same biology that makes this important claim possible.
Hence, our understanding of patient empowerment evolves yet again to include the notion that biologically we are connected with each other through a rich tapestry that includes more than one billion years of cellular adaptation. One goal for the post you are reading is that we find an insight illuminated when we view our ‘selves’ as minds, bodies, and biology. That we think, we move in space, and our cells are primarily involved in enabling our mental and physical lives. This realization is so vitally important because we understand our diagnoses–especially cancer, as something gone terribly wrong with our bodies, our cells, our genes, our DNA, but our bodies just are our cells, and our minds emerge from these bodies, from these cells. Liberating our mental and emotional lives from an attitude of self-deprecation that blames our bodies for our illnesses is an early and important step toward treatment and recovery.
Patient empowerment relies on an open exchange of knowledge with medical teams, an answer to the question why am I prescribed this treatment regimen, and a forgiveness of the ‘self.’
Cells and Bodies: Important for What’s to Come
The trajectory I have followed through these early weeks of documenting my own brain cancer battle has taken us through a technical discussion, describing glioblastoma multiforme (GBM). I introduced patient-centered healthcare by way of an anecdote. Today I offer insight into the relationship between our minds, bodies, and biological foundation. In the coming series of posts I intend to explore this biological foundation through the discussion of topics related to molecular biology. Specifically, I hope to say more about my own journey with Optune, the tumor treating fields (TTF) technology. I also plan to introduce the metabolic theory of cancer as a foil to the presently accepted genetic (or somatic) theory of cancer. These discussions are helpful as a platform to share my narrative as it relates to choosing a plan of care, it creates an opportunity for you to learn more about the frontiers of cancer research and therapy, and it enables me to sharpen my science communication, a skill set I seek to expand, as I hope to offer continuous improvement with the quality of my blog posting and look for opportunities to speak as a patient advocate on panels or events.