Four Months, Four Years, Four Lessons: Notes on Survivorship

“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.”

Adam, October 13, 2016

I published my first blog post to this site in early October, 2016. That post came right around four months after hospital discharge (the “Four Months” in the title of this post). I checked into the surgery floor at IU Health Methodist Hospital with Whitney early in the morning, May 26, 2016. Four years ago, to this day, May 26, 2020 (“Four Years” in the title).

In my first personal blog post, I wrote the words you see quoted above. I include those words here to signal my continued gratitude for my team. These thanks are well placed, as our family recognizes this significant day in our calendar.

Today marks four years after my craniotomy and surgical removal of a seven centimeter primary brain tumor from my right parietal lobe, an area of the brain responsible for five major functions, including sensation, motor control, and spatial reasoning.

Today we met (virtually) with my neuro-oncologist to hear the results of my recent MRI scan completed Saturday (May 23, 2020). This is a scan we will not soon forget. Masked, we entered the hospital Emergency Department because the general radiology entrance is closed on the weekends. (Radiology shares a back hallway with the ED for trauma-related imaging.) The security checkpoint includes a metal detector that reminds us of the complex social conditions that surround the lives of some people cared for at the county hospital. We also wondered what further precautions would shape the encounter during a time of covid-19 related restrictions.

Whitney and Adam pre-MRI, May 23, 2020

Worth mentioning, also, after an area of slight concern appeared on our prior MRI in February, our oncologist recommended adding an imaging technique called perfusion to this recent scan. The perfusion technique lengthens the duration of the procedure by several minutes and includes placement of an IV and additional injection (beyond the routine contrast dye) to study blood flow.

Here we were, then: After four years, something like 25-30 scans, despite our typical anxiety (scanxiety) that accompanies each routine MRI, we faced new circumstances, if only slight disruptions: Whitney’s recent course of illness after testing covid positive, the masks we donned, the secure entrance, distancing from others in the registration line, the new imaging technique, the empty hospital absent of visitors, and the pervading concern that maybe we were catching new tumor growth in its nascency.

Our visit this morning revealed news of a positive outcome: The scan shows no new growth, and our doc chalked up the concerning area to late-effect radiation damage. We might relax our concern for the near-term, and we look to August for our next routine MRI.

I do not want to let this day pass without offering something constructive after 48 months living with a disease that kills many in half that time (“Four Lessons”). These are not definitive, action-guiding principles for life. They are simpler. They are variations on a theme that I shared during a talk at Stanford Medicine X in 2019, refined and updated for my presentation at the End Well Symposium at the end of last year, and shaped by the contours of my personal manuscript that hopefully finds its way to print over the next year. These are lessons from living, while dying.

Consider your quality of life today. When faced with a decision in the operating room to pursue aggressive surgery at the risk of left-sided paralysis or take a conservative approach that would protect my motor function but leave tumor remaining in the margins of the surgical area in my brain, my surgeon instructed that I, “Make a decision based on your quality of life today, not what you think it may be in the future.” This turns out to be good advice for living in general, not only in the operating room. Each of us has an uncertain future. It is good to plan for the future, mitigate against harms and obstacles, and yet all any of us have for sure is the present moment. Arrange your life so that it aligns with your desired quality of life today, not an imagined future.

Face fear with familiarity. Focusing on the present and allowing the future to unfold is frightening because it asks first that we allow the uncertain and unknown into our lives. I suggest that we face fear with familiarity. What information is available to us today? What is within our control today? What is the immediate source of our negative emotions and intrusive thoughts? Becoming familiar with those things we may attend to in the present helps us acknowledge our fears, not to escape or dismiss them, but to become familiar with the inner workings of our brains that are wired to alert us to danger, even when that threat isn’t right in front of us. Familiarity is the antidote to fear, and I am reticent even to express this sentiment because fear is not intrinsically bad. Allow yourself to fully experience that breadth of human emotion, but center yourself with the focus on what is present and at-hand.

Consider what to say to a cancer patient. When I instruct others to consider quality of life today and leave the future uncertain and unknown, I am flirting with everyone’s favorite thing to say to cancer patients, “I could get hit by a bus tomorrow.” This phrase and the war metaphors that are prevalent in disease rhetoric are two facets of the illness experience that I’ve objected to in blog posts, tweets, and op-eds. They are more than unhelpful; they are harmful. Taking the latter first, the problem with framing cancer as a fight or battle minimizes the potential for wholeness and wellbeing that are available when an illness is embraced into our life narratives. A war leaves casualties, winners, and losers. Surviving is not a victory and death is not a failure to fight. Instead, maturity and growth through illness are possible, whether treatment leaves us with no evidence of disease or end-stage progression. Wars and battles leave little room for growth and acceptance, what scholars call existential maturity.

This advice specifically, and the next, are sensitive to the context of the patient and their preferences. I know many patients who frame their own experience as a fight, and that is their metaphor to claim. For me, in my most insightful moments, I’ve felt more the sage than the soldier. Illness leaves us with wisdom, not war.

Rethinking thoughts and prayers. This is a tricky one. We each are licensed to our beliefs, and all of us should extend as much charitable interpretation as possible to the words that others speak to us. I remind myself often that others express their very best intentions, and those intentions supersede the literal words they use. Though I’ll say this, it is very common for folks to cope with another’s serious illness by fitting that person’s illness into a Divine plan. I cannot get on board with this. It does not fit my conception of The Divine to imagine that I was singled out, given a potentially life-limiting disease, and by those circumstances, forced our kids to face the loss of a parent, so that God could teach a lesson through my experience. For God, whatever God is, surely there is a better way to teach lessons than clamp me to a table and open my skull. When encouraging someone facing illness, center your religious beliefs in what brings you comfort as the friend and observer, but be careful not to thrust your beliefs onto the person experiencing the illness. I recognize that your show of support for me is expressed through your carefully considered prayer and meditation for my healing, but healing may not be a cure. The healing may be my acceptance that no cure is available.

As you move forward, navigating these uncertain times of public health crisis, you may consider these lessons that I’ve practiced these four years: Align your decisions to your desired quality of life today. Live presently and familiarize yourself with those things that you fear. Consider healing, wellbeing, wholeness, and personal growth that may come through experiencing illness. And extend charity to others while respecting their beliefs.

A Declaration (Classification) of (Modified) Independence

Tonight I was crushed at freeze tag by a pre-teen, two children, and a peer. I mean crushed. My five and half year old was unfreezing me as needed, and when I was “it,” my three year old was my only active target. I had the head drop to juke left, but no spring off my left foot to jolt back right. I tried to spin away from an incoming freeze tag, and I aimlessly hopped on my strong right foot, down our slightly declining back yard.

I declared victory, anyway.

Not because my house, my rules.

No. Instead–well, if you have heard me speak in the past several months, refining and sharpening my illness narrative, you know the climax of my awake craniotomy and surgical resection to debulk a 71mm primary brain tumor included the adjudication of a life-altering decision to either press on with aggressive surgery at the risk of left-sided paralysis, or remain conservative, protecting sensory motor function with impairment, leaving remaining tumor in the margins of my surgical cavity.  I decided to pursue a more conservative resection, on grounds of my young family–three boys under five years old, and our (necessarily) active lifestyle. This decision was made while on the operating table, skull opened, my inner emotional and physical life exposed, if there is a distinction to be made.

Tonight I tossed my cane aside. I ran (I mean, sort of ran. Ran-ish) with my boys, their cousins, my brother in law. My awkward gait pounded my feet into the hard summer soil of an Indiana summer through the flat soles of the Sambas I used to wear for ollies and standing for hours at local concerts (“shows”).

My neurosurgeon told me to make my decision based on my quality of life today, not what I imagine could be the case in the future. My decision ultimately was to maintain what function I had left after a huge tumor smashed my right ventricle, motor sensory cortex, and post-central gyrus. I took this bet to leave cancer in my head and rolled the dice for research oncology to save my life while I hobbled after my boys outside during the slowest-paced game of freeze tag that’s ever been played.

Anyway, it’s July 4th, and that is my declaration of independence. My quality of life is better for it–shorter maybe, but for tonight, anyway, better.

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!

 

Inside My Head, Now on YouTube

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.

2016 Statement on Cancer

Two years ago, December 26, 2014, I had a seizure (undiagnosed).

This year, December 25, 2016, I had a seizure.

I have brain cancer, and like many, mine presents with frequent seizures. It took 18 months of “it’s probably stress related,” and “it could be vertigo” to get an MRI ordered (May, 2016) to investigate my dizziness and left-sided weakness and reveal a primary brain tumor. Since, I underwent (awake) brain surgery, inpatient recovery, inpatient rehab, chemo, radiation, and now monthly chemo cycles. I continue to struggle with seizures as part of my cancer. I vowed not to be the cancer mascot; not to fill your feeds and timelines with Adam and his cancer story. “I’m more than my disease,” I quipped.

New strategy: fuck that.

I am the cancer mascot on behalf of an estimated 12,000 newly diagnosed glioblastoma patients this year; 10,000 of those folks won’t live much past a year. I’m 7 months out from formal diagnosis. In these 7 months after surgery, I taught my left leg to walk again, my left arm to type again, I’ve learned cell anatomy, cellular metabolism, intro to genomics, and read extensively on competing theories of carcinogenesis. I am reading medical textbooks on biochem and molecular biology. I am graduate trained in the philosophy of science. I am strong; smart; driven. I am learning my disease.

If you think I cannot learn the biological features of my cancer..

If you think I cannot advocate to medical professionals on behalf of brain cancer patients…

If you think I cannot raise money and awareness for brain cancer research…

If you think I cannot contribute meaningful academic work with respect to the explanatory framework and ontology of cancer to benefit the medical oncology research community…

If you think I cannot expose at least one vulnerability of my aggressive cancer, with positive impact to clinical outcomes…

Prepare to have your beliefs revised.

2017 is my year.

Stay tuned.