To be chronically ill at Christmas carries several more considerations like continuous glucose monitoring or crutches and canes.
And to be terminally ill, or ill with an incurable and life-limiting diagnosis, “casts all social interactions in the shadow of illness,” Havi Carel wrote.
Aging is another category we might reflect on, and aging, especially if aging alone, even if by choice, I would think is distinctly challenging.
Some of you reading may be widowed, and the loss of a loved one opens a gulf that no vessel can navigate without having been through it. Our care partners (caregivers) are here, too, and they are burdened with the weight of illness that is a yoke not often shared.
What acute illness, chronic illness, caregiving, and grief, share in common is an embodied distress. A distress that is something greater than the sum of its symptoms. The description of embodied distress is not fully exhausted by the description of events happening. It is an emergent thing. Like the neurons and glial cells in my brain give me consciousness, but those individual cells aren’t conscious themselves in the same way that I am.
Distress is like that.
A description not fully exhausted by the way things are. We feel it. It hits differently than big meetings with the boss or preparing dinner for a visit from the in-laws. It’s not, “I’m stressed out today”; instead, it’s, “My heart is racing, I’m sweating, and short of breath.” The distress I’m trying to get onto is that sort of thing; that sort of embodied thing. Something visceral that includes those symptoms but isn’t merely a list of the individual issues, it’s the greater state that arises from all of those particulars taken together.
Illness, stress, burden, and burnout are states of an ill body, and I think each of these are with us always, in different degrees, each the same kind of thing, if that makes sense. The same sorts of things, kinds of things, that’s what we share, and only by the degree of intensity of presentation do we find the arbitrary line that we’ve drawn between the sick and the well. While maybe my body is sick in a technical sense because it can be viewed under a microscope, in an MRI machine, genetically, and given a diagnosis. The confluence of the outcomes of those studies produce a pathology, a discrete state defined by certain variables, that is sickness, but states of an ill body are not unique to sick people! Distress is a feature of the ill body, and after two years of chronic stress exposure during a pandemic entering its third year, I suspect that many of our bodies are in this ill state.
I want to ask, What Does Christmas Hold for the Ill Body?
It’s an embodied thing, too: Christmas. Smells of candies and coffee cake. Crinkling paper and secret Santa. Hugs with masks and “What’s your vaccination status?” We are buoyed by our family and lifted by our friends on FaceTime or face-to-face.
We forget ourselves for a moment suspended in time in a snow globe secluded from a harsh world, and we celebrate together with family, biological or chosen. Some rejoice in the birth of their Lord and others celebrate a reason to rest.
What does Christmas hold for the ill body? Affirmation you are loved, a warm blanket, a text from a friend. A day in the year that everyone feels something different, but everyone feels. An embodied thing. An emergent thing. That is Christmas, and my ill body gets a reprieve from the demands of regular life.
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.
You are reading one in a series of short posts translating the patient experience to an action-oriented context for clinicians.
My wheelchair was outfitted with a tray, which might be convenient if I were cruising the halls of the locked brain injury unit, snacking on Doritos I took away from lunch, sipping stale hospital coffee from a Styrofoam cup, with the red straw pinched on the end like the metal receiving mold of a stapler, greeting staff with a Cheshire grin—“should he be out of his room?” The tray, brittle plastic, sold to Boeing in the late-1970s to pop up from the arm rests. Ginger ale. Always ginger ale.
My tray was not for convenience, though, but for safety, my left-arm, limp with hemispatial neglect, a side-effect of a gross total resection, edema, and subdural fluid collection, which, for what it’s worth, is still there, in a pocket, inferior right parietal lobe, above the occipital lobe; though, my proprioceptive issues are greatly improved, no small thanks to the persistence, skill, and expertise of my therapy team, two OTs in particular, and my wife, who is, “his wife, not his therapist.”
The dead-fish left arm, kenesio-taped to the tray during early therapy sessions to keep it from getting caught up in the spokes of the wheelchair, had earned its independence. I was complicit in my in-room exercises, and for a reward, earned the activity of navigating my wheelchair without supervision around my room, to and from lunch, and down the hallway to my favorite reading spot, a large window at the end of the fourth floor, overlooking the main drive, a quarter mile or so, lined with trees, where I would read three Einstein papers during my stay. The staff likely is still not sure if I was actually reading Einstein, or, you know, “reading” Einstein.
The neuropsychologist entered around 6:30pm, June 6, 2016—so says my journal, my reliable eyewitness to those few weeks. (A week and a half out from surgery.)
He pulled a chair to the center of the room.
“You’ve been through a lot. How are you doing?”
“I’m really doing well, all things considered! I’m enjoying the schedule here, and I really appreciate the opportunity to rehab my motor and sensory deficits.”
This is my stock answer. I explain that I am expecting the pathology report soon to hear about the type of cancer that grew itself into a baseball-sized tumor in my right parietal lobe. “It will be good to know what we’re up against.”
I am still unsure if the pathology report was available in my records at that time, which the neuropsychologist would have, and probably should have, read, prior to his stop-and-chat, and it is not implausible to think everyone else had read it but was waiting for my neuro-oncologist to break the news. (Which would happen four days later on June 10, 2016.) Or maybe the neuropsychologist never read it. It is also possible that the pathology report was not yet available.
At any rate, my response, “…really waiting on that path report … can’t wait to hear what we’re up against,” is reason enough to suspect that this patient is unaware of his diagnosis.
“You appear to have a positive outlook. Do you feel anxious?”
[I’m in a locked brain trauma unit, separated from my family, less than two weeks out from major brain surgery, unsure of the type of brain cancer I have.]
“No, not anymore than what I would guess is to be expected. I actually feel pretty good, and I think having the mass resected from my brain has improved my overall health.”
[This much is accurate. My right ventricle was squashed into a pancake and the mass had occupied all available space in my parietal lobe, pinching the optic nerve bundle on its way back to the occipital lobe. I was having daily seizures, and episodic paralysis on my left side. Each of these symptoms improved after resection. I really was feeling pretty good post-op. Good enough to read Einstein, anyway.]
“Have you heard about the exciting new research for treating glioblastoma?” the neuropsychologist asks. He begins his ode to the polio vaccine: a soliloquy to research and the promise of a cure for glioblastoma. It is a grand love song to the miracles of modern medicine in which I tacitly feature as a supporting character.
In fact, this continues to be—the polio vaccine, I mean, a common response to people hearing about my diagnosis.
“Have you heard about this the polio vaccine!?”
It’s not just for New Deal Presidents, anymore.
This compulsion to share uplifting news grows from fascination and wonder with great respect and discomfort for our own mortality, “What if this were my diagnosis?” Our mortality is curious. It raises the Cartesian punch line that maybe I am strictly a thinking thing, and if that is the case, is that thinking separate from my body, or is it emergent from my physical processes? The churning, whirring, buzzing of a busy brain, and in the absence of these processes, so goes the thinking, and frighteningly enough, so goes me?
I think; therefore, I am.
I am not.
Therefore, I am not thinking.
The neuropsychologist continues.
“Mhmm,” I nod along.
“Have you watched the 60 Minutes Episode?”
“No, unfortunately I haven’t had the chance.”
“Maybe it was on Dateline. It’s really cutting edge.”
I rally from somewhere deep, “Oh! Thanks so much for sharing the information!”
Let us not give ourselves over to cynicism, it fails to be productive, but neither should we fail to learn lessons when available. My talented and bright sister-in-law would call this a #teachablemoment. I advocate a person-centered approach to healthcare, and I gather many of you do, too, if only implicitly. What I mean is this: there is a time in medicine’s recent past that, owing to any number of factors, the piss-poor antiseptic practices, the intimidation of meddling with one’s personal constitution, the inaccessibility of information, or maybe the poor track record of doctors was still appreciably better than at-home treatment, a patient would visit a doctor when sick, take his advice—certainly a “he” in these cases, and bite the bullet, drink the booze, what doc says, goes. If you’re not that sick, you don’t need the doctor, anyway, and if you’ve called for the doc, I suspect his advice ought to be followed.
The doctor-patient relationship I mean to evoke in this instance brings to mind fond cultural memories of our Little House on the Prairie obsession with frontier America, unbridled horses, one-room schoolhouses, and whatever else they packed into Back to the Future III. The doctor was an authority. An expert. An altruistic one at that, and so, what reason would we have not to take doc’s prescription to heart?
The following is my thesis. Our doctors do their best work when their patients are active, involved, engaged, participatory, willing, and honest. A person-centered (or “patient-centered,” if you like, but that sees the person as patient first, like the difference between “a colored person” or a “person of color,” yes?), anyway, a person-centered approach to healthcare places a responsibility on the person seeking treatment to view their self as an advocate, as vitally important to healing, as a part of their medical team. Doctors who are committed to person-centered healthcare inspire and recognize these qualities in the persons under their care.
Consider these mistakes committed by the doctor who visited me that evening: my diagnosis was unknown to me at the time of our meeting. Was I told my diagnosis during that conversation? I cannot answer that question.
The polio vaccine is administered for treatment of GBM under certain conditions to patients who meet strict qualification guidelines for acceptance into a specific research trial. Was application to that research trial recommended to me during that conversation? I cannot answer that question.
Dateline is not cutting edge; a recent peer-reviewed journal article in a field of specialty is. Was I provided with the resources to learn more about this new treatment option during that conversation? I was not.
I scribble away in my notebook. I breathe deeply. I position my tired left arm, using my able right arm, onto the wheel, and push myself to the wardrobe in my small hospital room to begin changing for bed. The path is obstructed. Doctor has left his chair in the center of the room.
Each of these transactions during this experience—the diagnosis, the clinical research, moving the chair, I was not empowered to take an active role in my own care; it was about doctor as authority, doctor as expert, and that is why this experience, despite all my rattled, broken, and fatigued body has been through these few months, stands out as one of the most negative. Power was withheld from me that evening.
Soon, or in some time, we will visit a sick friend; maybe a dying friend, and this will be an opportunity to empower or to hold on to power. I ask that we embrace the former and recognize when we are stubbornly adhering to the latter for our own insecurities, fears, or discomfort.
In Part I, I’ll share with you the journey that led to my GBM diagnosis (dx). In Part II I will share more information about what GBM actually is.
When an MRI scan revealed a 71mm primary brain tumor on May 13, 2016 (more background on the About page), my PCP called Whitney and me into her office. Together, we read the radiology report. You know the expression, it’s all Greek to me? Well it was, but for those who know me, you know that I’m a head-first, dive-in, full-commit student of topics that pique my interest. A baseball-sized tumor in my brain was an interest-piqueing phenomenon. At this early stage, though–that is, on 5/13/16, armed only with the radiology report, the pathology still a mystery, my appetite for knowledge would have to wait for more substantive medical information. That next piece of the portrait was painted by my talented neurosurgeons, affiliated with IU Health and Goodman Campbell Brain and Spine. Drs. Troy Payner and Aaron Cohen-Gadol. Drs. Payner and Cohen, with the assistance of resident Dr. Bracha, and an incredible anesthesiologist and OR team performed an awake craniotomy and surgical resection on May 26, 2016 (two weeks out from MRI).
Likely there is medical nuance I neglect, but I’ll use the following terms somewhat interchangeably: resection, craniotomy (cranio), or debulking surgery–surgery with the intent to resect/remove the maximum amount of tumor, while protecting the maximum amount of healthy brain tissue. A cranio is the first step in standard of care (SOC–remember that acronym, I’ll use it frequently) for treating primary brain tumors. The cranio was performed while the patient was awake–oh, the patient, that’s me! Dr. Payner’s decision, with the support of his colleagues, to perform the procedure while I was kept awake was to functionally map eloquent cortex functions (sensory and motor), while resecting tumor. The goal of this procedure is to aggressively remove tumor and leave the patient’s quality of life in-tact, to the extent it is possible.
I went to grad school for philosophy, and I cannot tell you how excited my friends and faculty were to hear that a fellow philosopher would undergo awake brain surgery. I can finally put to bed the question whether we are living in the Matrix! On that cliffhanger, let’s save the awake brain surgery story for a future post.
Before retiring this brief aside concerning surgery, I will say, and I say it every chance I get, my neurosurgeons are absolutely gifted, and I am in their debt for balancing aggressive tumor removal, with protection of my sensory and motor function. Drs. Payner and Cohen successfully performed a gross total resection (GTR–another acronym), meaning >90% tumor resection. Patient outcomes–overall survival (OS), is greatly improved by a GTR vs. partial resection. My surgeons’ skills have added time to my life, more time with my wife, more time with my kids. Thank you to my entire medical team.
Seriously. More on the cranio in future posts. I can’t wait to tell you about being awake for my own brain surgery.
*Back to the narrative.*
OK! The resection gave my medical team tumor tissue to perform the biopsy and generate the pathology report. (We opted not to biopsy the tumor pre-op because the damned thing was so big, it was coming out, no matter what it turned out to be.)
Post-op I was inpatient at the operating hospital for some time prior to moving to an acute rehab facility, where I continued to be inpatient, working with a neuro-specific physiatrist and OT/PT team to recover lost function resulting from brain injuries caused during surgery–even successful surgery requires rehab and recovery. It is of note that my acute rehab facility included my residency in a locked brain injury unit. (More fodder for future posts.) On June 10, 2016 (four weeks out from MRI; two weeks out from surgery), Whitney and I caught a wheelchair-accessible ride to the IU Neuroscience building in downtown Indianapolis to hear the official diagnosis.
Glioblastoma multiforme (GBM): the most common and aggressive form of primary brain tumor. The cause of GBM is unknown. GBM develops either from a lower grade astrocytoma or as a mutation from healthy brain tissue. Tease, tease, tease, I must say that mutating cells reflects the current dogmatic view in cancer research that cancer is a genetic mutation. Research dating to at least the 1920s suggests that rather than genetic, a metabolic origin may be at work in the development of some forms of cancer. I hope you’re as excited to read the posts I’ll have on this topic, as I am to share them with you. My post-dx transition to a calorie restricted ketogenic diet is a lifestyle change I have embraced to take an active role in my own treatment. Nutritional supplements or diet changes are not SOC, they are not FDA approved, and if you ask the medical community, research does not support the efficacy of such metabolic or nutritional resolutions for cancer. That said, clinical trials are underway. This topic (therapeutic ketosis) will be a feature of my blog. Plenty more to come.
I must say unequivocally, loud and clear, please hear me: I am not a trained medical professional. I am a smart guy, who reads, who wants to live as long as possible, and I view myself as active in my own self-care and treatment. I trust my doctors. I have followed and will continue to follow SOC. I am wearing the Optune device. Big pharma is not out to hide the cure to cancer. My disagreements with SOC, where they appear to be disagreements, at any rate, are avenues of research for me because I want to beat the statistics. Please know that the blog you are reading is my first step toward documenting my battle with GBM. Let those things that work and those things that fail play out here so that when my case study is written there is primary source material available.
Recall I said the radiology report was all Greek to me. So was the pathology report. But here the Greek can help us. Glioblastoma, from the greek glial, effects the “glue” of the brain–non-neuronal cells. This is what makes GBM so hard to fight, it moves about the cabin of the brain, with no regard for the fasten seatbelt sign. Hey, GBM, you’re in my seat, causing edema, seizures, possible personality changes, unconsciousness, and other such problematic symptoms. By the numbers patients see 12-15 months of survival post-dx. Approximately 3-5% of the diagnosed population is with us 5 years out from dx. These are statistics, folks, and just because 3 out of 5 dentists recommend Crest, Colgate is still doing fine. (God, I hope Colgate didn’t just go out of business.)
This is where I will leave things for now. In Part II, I will say more about glial cells–astrocytes, oligodendrocytes, and share how my neuro-oncologist (NO) thinks my GBM developed.
I would love to hear what questions, thoughts, ideas, or topics you’d like to hear more about. Tweet me, comment here, or drop an email.