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.
Please click to view the one hour talk now available on YouTube.
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.
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.
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.
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.
Cancer.
The “Big C.”
“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.
Noah, #MiddleChild, left; Gideon, baby, right, visiting Dad at Rehab Hospital, June, 2016.
“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.
Normalizing Novocure
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.
Mitch Hedberg tells a joke about how uncomfortable it is to wear a turtle neck with a backpack. I describe wearing Optune in similar terms: it’s like wearing a snug beanie and carrying a large bag, 20 hours a day. The bag restricts your movement and the beanie makes you hot. You’re hot and restricted! It is hard not to become irritable.
Me, Normalizing Optune and Minivan Shopping with my Wife, November, 2016.
Wearing Cancer
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!
Cheers- AH
Introduction: Biology, Bodies, and Minds
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.’
My neuro oncologist and I discuss treatment; November, 2016.
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.
I’m looking forward to it!
Cheers- AH
Recently I have been talking about patient-centered healthcare, and I offered a philosophical take on patient empowerment, drawing from my own experience. One important suggestion I advanced is that both patients and medical teams share common ground: asking why? In this post I focus on the patient experience. In the future we will see this question framed for researchers.
Patients are often frustrated, disgruntled, and disengaged when they are not enabled to speak competently to their own treatment. I suggested a medical team is accountable to empowering patients by facilitating understanding of what to expect from treatment, therapy, or a special procedure. Most importantly, the onus is on the medical provider to illuminate why an order is an important component of a person’s plan of care. Empowered patients are more likely to take an active role in their care, treatment, and recovery. Recall a recent medical intervention, and answer the following questions: Why has my doctor ordered this test? Why have I been prescribed this medication? Why is this therapy recommended for my particular diagnosis? This is a nice litmus test for the health of the dialogue with your primary care provider. I also hope this activity reinforces the notion that patients knowledgeable about their provider’s decision-making are more engaged and diligent when sticking to a treatment regimen.
Speaking of sticking to treatment regimens…
Deserving of its own post, I am contemplating discontinuing use of the Optune device (tumor treatment fields (TTF)). This recently-FDA-approved (for glioblastoma) durable medical equipment (DME) slows the growth of tumor cells by emitting an alternating electric field targeting the site of tumor growth, disrupting the process of cellular division (mitosis). A full description of the therapy quickly becomes complicated, and to wrap our minds around the mechanism of treatment, we would need to get into the weeds with theory and terms, including mitotic spindles, apoptosis, and the molecular dipole moment. Of course, I would have great fun blogging on this topic, but my fun may not leap off the page (screen). You can let me know in the comments, if you want to hear more. Regardless, as I consider continuing TTF therapy I seek answers to the contrastive (why?) questions I asked you to consider from your most recent medical intervention.
The Optune is inconvenient, requiring changing the equipment, shaving my head, and cleaning with alcohol. It is adhered to my shaved scalp with medical-grade adhesive, generating heat, like wearing a beanie all day, with a bulky braid of wires running from my head to a two-and-a-half-plus pound battery backpack. It is neither fashionable nor kid-friendly, and midnight bathroom breaks are more cumbersome when you are plugged into the wall socket like a floor lamp.
Levity aside, wearing the equipment complicates transferring my one year old to his crib for bed; it frightens my three year old who has taken to yelling “no, daddy!” when I walk in his room; it impedes my ability to grab impromptu dinner with my wife and walk the Cultural Trail, without first thinking through stowing an extra battery or two and working out a jacket and hat combo to complement my three-pound backpack and headgear. Psychologically, wearing such equipment constantly reminds the wearer: you are ill; different; set apart.
An important question remains unanswered: why is this particular therapy recommended for my particular diagnosis? The fact of the matter is this. Nothing else has stopped GBM. There is not empirical data to support alternatives to TTF therapy–at least, not empirical data that is FDA-sanctioned. Optune is an exciting, non-invasive therapy that has extended overall patient survival during clinical trial.
Discontinuing treatment offers a reprieve from inconvenience, maybe improved connection with my wife and kids, and a return to some normalcy during an unsettled time. Is this trade off worth sacrificing a statistically significant improvement in overall survival time?
The importance of answering this question cannot be overstated. My reality may diverge in severity from the medical decisions you face today. To put it in rather stark terms: every eight weeks I endure a 40 minute brain scan followed by an appointment with my neuro-oncologist (NO) to hear whether my cancer is growing. There is obviously much at stake, and imagine my state of mind should I discontinue TTF therapy, and subsequently discover tumor progression on an upcoming scan.
I encourage us all, not as a gloomy reminder, but for your thoughtful consideration as spouses and family, to entertain the types of treatments you are willing to endure, what side effects are tolerable, and when you would decide to discontinue treatment. The answers to these questions may inform your healthcare power of attorney.
Notice what is central to the preceding paragraph? These decisions are within your control. The decisions are yours to make. Decisions are to be made with the support of your medical team, and as I have already suggested, medical teams share in the responsibility of educating (hence, empowering) patients under their care.
Sticking to a Controversial Treatment Regimen: What Changes?
In the coming posts I will introduce the vitally important role nutrition plays in the prevention and treatment of cardiovascular disease, neurodegenerative diseases, diabetes, and, yes, cancer. Nutritional resolutions are difficult (for a myriad of reasons, proving their efficacy in a clinical setting among the most challenging) because for their success, nutritional resolutions require strict adherence. This remark is not terribly insightful, anyone who has tried out a new diet or New Year’s resolution already knows this. All aspects of food: our American cultural associations with the wholesome farm, rooted in our identity as an agrarian pilgrims, surviving on corn, and preserving in the root cellar, the happy cows from California (c), our governments’ farm bill and subsidies, Mark Bittman, Katie Couric, the paleo diet, kosher delis, meatless mondays, Weight Watchers, and Ramadan, and let us not forget Holy Communion. Table fellowship is central to physical, emotional, and for many, spiritual lives. Messing with eating practices is calling into question childhood memories, emotional coping mechanisms, religious practices, and evolutionarily-signaled cravings.
Calling into question eating practices is just what I plan to do. We will explore the ketogenic diet as a resolution for cancer and neurodegenerative diseases. Keto’s efficacy is contingent on the metebolic theory of cancer, so you know we will need to get that theory on the table. Keto is about our body metabolism; metabolic theory of cancer is about cellular metabolism. Be on the lookout for my next post: Our Cells; Our Bodies.
Cheers- AH
In Part I of this post we followed my journey toward GBM diagnosis, I briefly discussed Standard of Care (SOC), and I teased the post you are presently reading by connecting the etymology of glioblastoma to the Greek “glia,” meaning “glue” to indicate the affected cell types for malignant glioma–namely, non-neuronal brain cells such as oligodendrocytes and astrocytes. These glia comprise 90% of the brain. Together, the neurons and glia are denoted by the word parenchyma– gold-star word alert, meaning the functional bulk of tissue rather than structural or connective tissue.
It is clear that together we are wading into waters ankle-deep with medical terminology, but I hope you’ll stay with me. On the other side we will have learned something about our brains and bodies.
Understanding glia contributes to our evolving understanding of GBM. At least one ideal outcome to better understanding GBM is that we may better understand how to effectively fight, and ultimately, to cure, the disease. Of course many of you are reading along because you support me, and are interested in my fight, and I value your support. Part of being a good partner with you, is that I restrain from offering hyper-technical descriptions of cancer and associated treatment. I am not a medical professional, and I am not here to provide an alternative to Wikipedia, which would be both superfluous and not nearly as comprehensive. At any rate, I plan to stick to the narrative, for the most part. I’ll introduce technical knowledge into the discussion when I think it is warranted by its significance to understand the journey we are walking. Firming up our grasp on glia is one of these moments.
Glia play an important role in protecting, insulating, and facilitating neuronal connections, but that sells our glia short. Astrocytes play a central role in creativity and imagination. More striking, Albert Einstein’s brain, rather anatomically unremarkable in many respects, displays a higher concentration of astrocytes, densely populated in the areas of the brain involved in spatial reasoning and mathematics. Do we have astrocytes to thank for the upheaval of the Newton’s classical mechanics and ushering in of the age of relativity?
Oligodendrocytes, also glia cells, insulate axons to protect nerve fibers which carry electrical impulses away from the neuronal body and communicate with other axons or muscle fibers at connection points called synapses. So much to learn about these fascinating cells that play an important role in our thinking, perceiving, abstracting, moving, and feeling our way through the world. For each of these glia types discussed there is the risk of cancer: astrocytoma, oligodendroglioma, glioblastoma, and so on. These cancer types are graded according to World Health Organization (WHO) criteria, with a higher grade indicating cells exhibiting more rapid growth and greater divergence from normal cells. Glioblastoma multiforme (GBM) is a grade IV glioma/astrocytoma.
Let’s assemble our puzzle.
The brain is 90% glial cells. In a grade IV glioma, the resistance to therapeutic intervention is the following. Mutated cells easily track through the white matter of the brain, surrounding neurons, and invading vital brain functions. GBM, through cell division, branches, spreads fingers of abnormal cell growth (“Abby someone. Abby Normal. I’m almost certain that was the name.“) A malignant glioma can never be 100% resected because these branches, or fingers, even if visible on an MRI scan, are so invaded into healthy brain, a complete resection would sacrifice vital functions. The multiforme of “Glioblastoma Multiforme” indicates gross malformation of tissues, topographically, in other words, the structures of the central nervous system (CNS), microscopic malformation at the cellular level, as just discussed, and genetic malformation resulting in aberrations in the signal pathways that trigger cell division of mutated glia. These signal pathways, involving molecular signals, which latch onto receptors in cells to initiate activities such as metabolism and mitosis, likely deserves its own discussion–let’s table that for now.
GBM, perhaps unhelpfully, but at least sardonically (#smh #cancersucks) is called “the terminator” just for these reasons: its pervasiveness, its resistance to therapeutic intervention, its unknown origins, and so forth. Consider the new treatment options showing success at our best cancer institutes: Optune, an electric-field emitting “cap” or “hat” that a patient wears at least 18 hours each day, alternates an electric field, pervading the brain, thousands of times each second. The electric field interferes with cellular mitosis (division). When glia attempt division, the electric field prevents proper alignment of the involved protein-chains and results in cell death. Optune is shown to delay tumor growth and extend overall survival rates when used instead of chemotherapy alone. This is the recent medical intervention I have employed in treatment of my own GBM.
CONCLUSION: We set out to answer, What is GBM? Along the way we learned that GBM is an aggressive cancer affecting parenchymal cells of the brain responsible for creative thinking, reasoning, nerve fiber protection, and other neuronal-supportive tasks. These cells comprise the bulk of brain tissue; hence, GBM spreads easily to surround neurons and vital brain structures. Innovative new treatments focus on disrupting cell division.
Keep learning. Keep fighting.
Cheers- AH
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.
*Aside.*
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.
Tough 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.
Keep learning. Keep fighting.
Cheers- AH
