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.

Glioblast-OMG: What is GBM, Anyway? Part I.

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