Learning Lessons this Holiday with Cancer

Defcon: Seizure

Light-headedness, bordering on dizziness, headaches, worsened by fluorescent lights, anxiety, and uneasiness, especially in large crowds, weakness through my left leg, a three-pound battery backpack and electrodes taped to my head. It is time for our preschooler’s (the older two boys) Holiday Program. I am a six-foot-two, awkwardly gaited, cane-hobbling attention grabber as I shuffle through the chaos of hundreds of young families to find seats and keep a hand (or at best an eye) on our youngest. Grandparents are there to help us, and there is an unspoken young family code that if an 18-month old is running by, drooling and smiling, you are licensed to scoop up and restrain this child-on-the-loose until a parent or guardian arrives to relieve you.

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Left to Right: Isaac, Noah, Gideon; Holidays, 2016

Whitney and I volunteer at our kids’ school regularly: field trips and “special days” celebrated around birthdays, distributed across our two boys we have enrolled, and the three years we have had at least one child attending, we’ve volunteered at Crabapple Creek often. Lately these events have totally drained me. The fatigue and other physical challenges put me in defcon five for seizure risk. My body has taken to rather sudden, mild seizures when I place too much stress on it. Like an overheating engine, after a long day, a stressful event, or over stimulation from bright lights, patterned and textured floors, or colorful walls, my brain short-circuits. I experience the familiar twitchy, dizzy, motor function loss characteristic of seizures. I usually feel it coming a few seconds before seizure strikes, and I must sit down. Immediately.

A War of All Against All

Thomas Hobbes wrote about the state of nature, a competitive, every person for herself, war of all against all. I have read Hobbes a handful of times, as I suspect many with at least a BA in Philosophy have done. My closest reading of the Leviathan, where Hobbes articulates his theory, happened in a History of Philosophy course, Society and State in the Modern World, or something like this, a seminar-style discussion course.

Hobbes imagined a violent natural state, red in tooth and claw. Each person has a natural right to survival, and in the face of limited resources, our competitive drive and natural rights lead to a life that is “solitary, poor, nasty, brutish and short.” Hobbes proposed our only path toward peace is to acknowledge that our right to survival is better protected by cooperation, and so we contract together and appoint a government to enforce our pact. This is one theory of social contract: Rousseau articulates an alternative view, but that will have to wait for another time.

My lesson from that seminar, and a close reading of Hobbes, is this: the really frightening thing about the natural state is not the literal violence of a war against all, but it is the insidious, psychological threat of the potential for war, losing one’s natural right to survival. The war is psychological; fear-driven.

Navigating big events, especially those with young families, hundreds of quickly moving children, and overstimulation of being in the center of these things, reminds me of this Hobbesian view because I feel the strain of this psychological war. I am fearful of seizure. Where could I sit? How could I avoid a scene? What if I lose consciousness? How close am I to Whitney, who will know what to do?

I am consumed by my fear, and I fail to engage meaningfully in the event.

Hobbes instructs us to, whenever possible, pursue peace. Create a contract for cooperation. I apply these lessons to my own psychological war, defcon: seizure. I seek the cooperation of spouse, friends, family, and remind myself to be honest, to trust others, to acknowledge my right to self-preservation is better protected by setting my individual rights aside and contracting with those in my community. Hobbes imagines this will be a challenge because we are competitive by nature. For those of you who have had to rely on others, given medical, financial, or other personal hardship, recognize the difficulty in sacrificing your own rights, but also notice the value in cooperative living. It is difficult to admit you need help. But to be fully present, we must give up our selfish, first-person view, and rely on others.

Dealing with Ambiguity

The Holiday Program includes a dramatization of the nativity. Our Middle child was the “blue king,” signaled by his blue construction paper crown. Our oldest was Mary’s donkey. Before the nativity the kids show off their “circle time,” a daily school activity. Each child is assigned a different “job” (“Continents,” “Solar System” “Weather Watcher” “Line Leader,” etc.) to perform and learn by doing. In the comfort of the classroom the children happily perform their “jobs” without much goading from the teacher, but under the proud gazes of grandparents, flashing camera bulbs, and strange surroundings of a new environment, the children are less cooperative. I am impressed by how well the teacher and aid handle the kids’ uncertainty and anxiety.

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Noah, the Blue King; Holiday Program, 2016

I once held a position, Senior Training Specialist, and one of the responsibilities included coaching leaders on creating and executing personal development plans with their direct reports. These “PDPs” were competency-driven, meaning we coach behaviors rather than specific tasks. A competency that many struggle to get right is dealing with ambiguity. No surprise: most of us hate change, we fear uncertainty, and we like our routines: we are creatures of habit, we like to say. To successfully deal with ambiguity, the behaviors include being present in the moment, knowing your resources, communicating openly, and making decisions with limited information, not waiting to see the whole picture.

Few deal with ambiguity better than preschool teachers. Our CEOs should shadow teachers as required “on boarding.” Better yet, more teachers should be made CEOs, or at least paid like it! Teachers live in the moment with their kids, looking for opportunities to turn every day experiences into lessons, going with the flow, embracing change, helping their kids be part of a process rather than only gears in the machine. We all want to be part of something, and working in cooperation helps us achieve a common goal.

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Isaac, Mary’s Donkey; Holiday Program, 2016

Showing Up for the Holidays

Cancer is filled with uncertainty. The rhythm of my life is monthly chemo, bi-monthly brain scans, repeat until the tumor grows back. In the words of my neuro oncologist, “the probability that this tumor will not recur is highly unlikely.” My life is waiting and uncertainty. If brain scans are stable, that is, show no tumor growth, what therapy is working and should continue? If we see tumor growth on the next scan, what treatment failed?

My therapies include (or have included) radiation, chemo, Optune Tumor Treating Fields, ketogenic diet, diffusing essential oils, and nutritional supplements. I monitor these therapies closely to narrow variables so success or failure can be attributed to a therapy, but all this is dealing with ambiguity, attempting to make decisions based on limited information.

Of course the biggest uncertainty that my wife whispers in my ear as we share a bedroom with our sleeping baby in the crib beside our bed, usually the older two boys have found their way in to snuggle, and the five of us are tightly packed in these close quarters, reminded that we’ve given up our own space to move in with my parents, and they have given up their space to welcome us, is that each Holiday, this Holiday, could be my last Holiday, or the last Holiday that I feel well enough to be out of bed, attending Holiday Programs.

This is why I go to see my kids dramatize the nativity, even though I attract strange looks, accidentally step on people’s feet, and risk seizure. This is why I show up, because each moment with my family is a sacred moment.

Learning Lessons

We can draw lessons from my experiences because they are not only my experiences: they are our experiences. We all face uncertainty. We all face difficult decisions. We all have individual goals and have to balance our desires with those of our community. What I am learning through writing this blog is that dealing with a grade IV glioma, a primary brain tumor, a disease without a cure, is that my life experiences are distilled, different in degree, maybe, but not different in kind or type from the challenges we all face. We walk a similar journey. I give voice to our shared struggle like tasting a concentrated ingredient on its own makes it easier to pick out in a dish.

Here are some more of the lessons I am learning this Holiday season:

  • Put your individual hang-ups aside and recognize we all need help from family and friends. Focusing only on yourself leads to a Hobbesian state of nature: psychologically damaging and fear-driven. Ask for help! Cooperative living is peaceful living.
  • Do what our teachers do: deal with ambiguity. Do not fear uncertainty and change; embrace it. Become comfortable with limited information and closely monitor when your attempts at solutions work and when they don’t. Adjust next time accordingly.
  • Most importantly, show up! We may have a hundred reasons not to attend an event, family gathering, party, dinner, or whatever, but taking on a challenge today and making it through is better than putting it off until tomorrow and never getting the chance.

Happy Holidays, friends! I’ll see you next year. 😉

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Me and Whit, watching the kiddos; Holiday Program, 2016

One Day, I Will Die

Sitting on the couch at my parents’ house, my older two boys bounce on the cushions beside me, I flick my thumb upwards against the cracked glass screen of my iPhone to scroll the mobile-optimized pages of Vice to read the article, The First Time I Let Someone Die (December 10, 2016).

Tears well in each eye. The corners of my lips turn downward like the taught angles of a freshly laundered pillowcase, pregnant with a newly fluffed pillow. My index finger and thumb form a right-angle and rest above my chin, below my lower lip, squeezing my cheeks on either side, the webbing between my thumb and finger in the formed L is scratched by the coarse hair of my beard. My bent elbow rests on the soft fat of my belly and my posture is convex or crescent moon, as I fold in on myself, barely sobbing, beside my children playing.

Dr. Rahul Jandial’s piece is a personal anecdote borrowed from his neuro ICU residency. The article recalls a patient Dr. Jandial was unable to save, her family, and the circumstances of her car accident and brain swelling, leading to her inevitable death. Dr. Jandial draws us into his narrative and offers a glimpse of his patient’s physical scars traded for the emotional scars he continues to carry.

Please follow the provided link to read Dr. Jandial’s article. It is important. (Of course, first, I hope you finish mine.)

 

I sob often, and I am not ashamed to admit this is not a post-diagnosis development. The proper conditions regularly result in my tears. These conditions include, but are not limited to, the following: romantic comedies, deep, meditative breathing, Neutral Milk Hotel live recordings, powerful personal anecdotes, and lying beside Whitney in bed, holding hands, wondering how long or short our lives together will be cut.

Dr. Jandial’s contribution to my Sunday afternoon reflection meets the previous criteria. You see, we humans are deeply empathetic, and when we read an account like Dr. Jandial’s, we imagine ourselves as the young resident, or the patient, or the patient’s family, or, many of us need not imagine at all because we are the patient; we are the family; we are the resident.

I sob this afternoon because each contemplation of my own mortality introduces a new lens through which I view the future inevitability: my own death. My empathetic connection to Dr. Jandial is that one day my physician will let me die. I am the patient whose pathology revealed the inevitable march of disease toward patient death. I empathize with my doctor, and I sob for her. I sob for myself.

This will strike many of you as uncomfortable, as if I am admitting defeat too early in the battle. To signal a white flag of surrender is not why I write this post, at least not anymore than I think Dr. Jandial published his narrative only to remind us that often medical intervention fails. The motives are much deeper, and the lessons available for us to learn, if we take the opportunity. Dr. Jandial reports, “To take care of the dying you have to become comfortable with death.”

So it is with glioblastoma.

To properly care for myself. To be an informed and empowered patient, I must not only confront my prognosis, but in fact, I must become comfortable with it.

 

Before surgery I wondered if my heavy eyelids would gently shut and never again open. In the days leading up to my surgery the closing of my eyes became ceremonious, ritualized, rehearsed, and well practiced. I closed my eyes to usher in death. What would this be like? I wondered if I would be aware of death, if my body would sense my slowing pulse, my labored breathing, or only the heavy eyelids would signal death.

These thoughts were somewhere close to the surface when I gripped the back of my hospital gown to pull it closed and shuffled to the bathroom in the pre-op wing of the hospital to be prepped for surgery. I passed by other rooms where other patients were prepped by other nurses. I received an IV line, my clothes and possessions were bagged like I was spending a night in the drunk tank, and surgeons, OR nurses, residents, family  members, and the chaplain marched in and out, drawing the curtain open and closed with dramatic theatrics. Maybe this was a dress rehearsal. The actors entering and exiting the stage. The curtain opens and draws close. When it was time for my performance, I squeezed my wife’s hand.

Exit stage left.

Curtain opens.

Break a leg.

The fluorescent lights passed overhead as my gurney wheeled down the OR corridor. Hypnotically these lights clicked by like street lamps through the window of a speeding car. I was surprised that doors to other operating rooms opened and closed. I wondered if those same patients I hid my modesty from earlier were now laid bare on the OR tables as I sped by. The white lights washed out the details. Soon would be my room. My eyes squint from the white fluorescence of the operating room. My eyes gently close. I feel my pulse. I feel my breathing. I am alive. I am prepared. I am comfortable with the craniotomy we must now perform.

The surgical resection of my 71mm primary brain tumor was a complete success: a gross total resection. Nearly 95% of the tumor removed. A gross total resection is a strongly positive prognostic indicator. My ability to remain awake, calm, and responsive during surgery accomplished two things: first, my my left-sided sensory and motor function was protected, preventing left-sided paralysis, and second, my patient-surgeon-partnership facilitated aggressive tumor removal, adding months or more to my expected survival.

My memories are vivid of the procedure, and I recall one of my surgeons telling me, “Dr. Kenner will make you a little drowsy for us to close.” I recall the three-point, 30-PSI fixation device unscrew. Then my head cradled and wrapped in bandages by the competent hands of my surgeon. Soon those fluorescent lights click by again, this time back tracking our earlier route, now heading out of the OR and toward recovery.

 

It turns out (surprisingly) the (awake) brain surgery proves to be least challenging obstacle to overcome. In the months since I have received PT, OT, neuropsych evals, chemo, radiation, seizures, and a wearable electric cap to treat my tumor with electric fields. Nearly each day I scour the internet for new case studies, clinical trials, research papers, and genomic information to inform the care, treatment, and new frontiers for dealing with my malignant brain cancer.

I am often irritable, short-tempered, quick to scold my kids for throwing food or refusing to dress for school. I am on long-term disability. I cannot drive. I am stir-crazy. I am praised publicly for inspiring others with my positive attitude, but I often hurt the feelings of those closest to me.

I am seeking comfort in the face of difficulty. Dr. Jandial reminds us that our efforts may fail, and failure leaves a scar. The lessons are in the healing, and I learn more each day.

Scan Day!

At every occasion I’ll be ready for the funeral. Even if we read too much into the meaning, no matter, turn it up as you read this post. Here are the lyrics.

Welcome to scan day, everybody! Our every-eight-week-installment of what is happening inside Adam’s head. I get to wear scrubs, the techs are friendly, I see my neuro oncologist and his terrific nurse coordinator, and I get a Starbucks after; sometimes a pastrami on rye with mustard. What’s not to like?

Keep the following acronym in mind today, friends: PFS–progression free scan.

Watch the fluids, not too much coffee, I’ll get a bag of IV saline, contrast dye, and no bathroom  breaks for 30-/40-odd minutes while high frequency magnetic resonance aligns the proton spins in my tissue to capture radio images of my brain. Hey, hey, enough with the science.

It’s like this: *bang bang bang bang*, and then we get pictures.

Lie still.

Last night was the first-Sunday-of-the-month #BTSM (Brain Tumor Social Media) chat. Topic: Death and Dying. We enjoyed engaging with patients, caregivers, palliative care docs, and hospice providers. I look forward to these monthly discussions to connect with my community–and even though we’re conversing at 140 characters, I have developed meaningful relationships through these chats.

The topic, death, dying, advanced directives, and so on will show up here soon enough. For now, the key take-away from last night is that preparing for end-of-life is a conversation that should occur  openly and often between patients, loved ones, and medical teams.

At every occasion, we’ll be ready for the funeral, and preparing ourselves helps us live into every moment, seeking meaningful relationships and pastrami sandwiches.

Cheers- AH