On Being a Mascot

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

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

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

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

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

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

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

I was a cancer mascot. What would I represent?

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

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

Proudly, even.

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

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

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

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

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

Happy anniversary, and cheers!

 

A Walk in My Shoes

This is a first-person experience story of living with three young children, a dedicated, hard-working wife, and, yes, brain cancer. My objective is to remind us to not discount patients’ chronic illness on the grounds that you cannot “see” the symptoms.

A parenting instinct activated upon the first steps taken by your first child heightens a sixth-sense ability to recognize sharp corners, protruding from dining tables, low counters, wooden chairs with arms, open cabinets, and playground equipment, to name a few of such hazards. With little thought, no break in conversation, with the finesse of a no-look pass into the paint, a parent will reach down to place a hand around the bottom of a protruding corner as her child stumbles by and ricochets off the safeguarding hand–rather than, say, ricocheting off the sharp corner. My family recently moved to a new home and our kitchen counter appears custom-built to the median height of 36-48 month old children. My corner-sense was tingling! Contusions avoided.

These days I recognize myself doing something else to safeguard these corners: no longer do I protect the bottom of the sharp edge to keep little skulls safe, I cup the entire corner to keep big skulls safe, too. See, I am prone to seizures, and I have before struck a kitchen table while experiencing a seizure.

Whitney and Adam, Post-seizure run-in with the dining table.

My seizures are well-controlled with Keppra and Vimpat, the peanut butter and jelly of the epileptic neuropharmacology space. Though as I discovered on the morning of March 6, after delivering a public lecture to 250+ attendees on March 5, followed by dinner with close friends, my fatigue and anxiety is pretty well correlated to seizure incidence. On the meds my unconscious convulsions are a distant memory from inpatient post-surgery recovery (and that one time at my folks’ with the table), but light-headedness, dizzy spells, and left-leg weakness are the trademark signs that I stretched myself too thin. I am experiencing them near daily this week.

The following is why. March 5 I delivered that public talk, March 13 I sat for a 90 minute interview rehearsing my story and discussing end of life planning for a palliative care website (IKS.com; here is my blog post about that experience), March 29 I delivered two back to back lectures at Marian University. In April our family moved homes, during the rest of the month I delivered a lecture with an IU School of Medicine narrative medicine course, and I delivered a lecture sponsored by the IUPUI Religious Studies department. I prepared a proposal for an interdisciplinary conference (Communication Medicine and Ethics) that was accepted; I will present in June. This weekend I am scheduled to visit Washington to conduct meetings with Indiana’s elected representatives and senators to advocate for cancer research funding.

This is all to say, I am busy. And I love it. Writing and speaking are therapeutic, I teach medical professionals to consider more deeply patient interactions, and I advocate on behalf of fellow patients and survivors. Advocates like me are preparing a better road for you if you face chronic illness. Please reach out and invite me to address your patients, faculty, medical professionals, clinicians, nurses, chaplains, and so forth. It is my passion, and I am good at it.

Back to the topic: I am pretty worn out these days. How am I feeling? Not great. I’m safeguarding the top and bottom of each corner I pass for fear a mild (or major) seizure incident will send me, head first, into the sharp edge. I require a cane for balance, and I “furniture surf” through my home to keep from losing balance.

The following are symptoms I experience; in some cases, I offer actions you can try at home to emulate my symptoms–clear the area of sharp corners!

  • Headaches, local: these are localized to primarily the area of my surgery (craniotomy). There is a divet and line tracing the incision and partial skull removal where the bone is fusing. Consider a broken arm and dull aches even after cast removal. Examine scars on your body with your fingertips–broken bones, surgical scars, places where a laceration required stitches, and so on. Let your sensitive finger tips distinguish these areas from unblemished tissue. Now imagine these vulnerable areas are on your head. My “head divet” aches.
  • Headaches, global: I experience near-daily general headaches. These daily headaches are often tension or compression headaches. After resection of a 71mm mass and edema my healthy brain tissue is reclaiming available space in my skull. My parietal lobe healthy tissue is moving back toward the occipital lobe. Squeeze a few inches of muscle tissue in your arms or legs and consider how moving tissue feels with respect to connective tissue and your skeletal system. Tissue is shifting inside my head.
  • Motor deficits: fatigue exaggerates my motor deficits, and chemo makes me very fatigued. Think about your last leg day at the gym. Jello legs? My left leg feels like this nearly all the time, and my right leg bears the compensatory burden. My left hand is slow, and anything held for long periods of time in my left hand is almost always tilted, spilled, or dropped. (“Oh, Lefty,” my wife and I will say to ward off frustration with humor.) My left-hand fingers and thumb are lazy while I type out texts, tweets, and emails.
  • Sensory deficits: communication between nerves and my sensory cortex is damaged. I often feel sensations on my left leg, but I am unable to locate where or what these sensations are without visual input. My leg and foot tingles and feels numb. 
  • Proprioceptive difficulties: related to sensory deficits, I struggle to locate my left side in space. I often bump into people and things given a spatial and sensory left side “blind spot.” Try this, find a step, stand on the step and let your left leg suspended above the floor. Close your eyes and move your foot and leg in a big circle, hovering over the ground, then stop and try to tap the ground, no looking, this is how each step with my left foot feels. Or close your left eye, keep your right eye open, and make an obstacle course in your home around tables and chairs.
  • Light-headedness: during my most fatigued days I feel like someone has taped a helium balloon to each side of my head, and the feeling–though not the visual experience, is wayward and wobbly, swaying back and forth.

It is easy to neglect the symptoms of chronic illness when we do not “see” them. It is easy to think of me doing well, and think, Adam is so active, he is in great shape. Do not think that in the absence of oxygen tanks and chemo infusions that I must be doing OK. Do not think that because I am able to speak publicly, to accompany my family on errands, or because I have a date night with my wife every few weeks that others are granted license to state how I am feeling. It is almost always better to ask me. “How are you?” Doesn’t feel quite right, but, “how are you feeling today,” is good.

My talks and other activities are not done in the absence of symptoms but despite them.

Please don’t mistake this honest (and at times assertive) post as a call for acknowledgment or recognition, but as a reminder that few of us are granted access into the inner lives of our friends, family, and acquaintances, but inaccessibility does not warrant assumptions.

Let us seek to walk in each other’s shoes before critiquing their fashion sense.