The Will to Defeat GBM

Dan Zappa, GBM survivor

By: Dan Zappa, Glioblastoma Survivor

There is no routine for a military family! Our young family was making plans for a return to “normal life” when I came home from Afghanistan in Spring of 2014. But something was wrong with me, and a CT scan revealed a mass on my brain. I was diagnosed with Glioblastoma Grade IV brain cancer in 2014 – nearly eight years ago. In the time since my diagnosis I’ve had three craniotomies, chemotherapy, radiation therapy and immunotherapy trials with Duke’s world-class brain tumor center.  

I recently had a recurrence of GBM after 6 ½ years of clear scans. This is the backdrop for the latest chapter in a story that just keeps getting better. Through the grace of God and the wonderful people at Duke, I am here to testify that anything is possible if you believe and cultivate your will to win. 

The day of the first CT scan, I wrote down five things without thinking in a notebook: Fight & Win, Show Grace, Be Grateful, Love, Set the Example. These principles help guide me to respond well to the challenges I encounter daily. 

"You aren't going to quit."

It was not the reaction I wanted from my father. As we drove to little league baseball practice, he looked straight ahead without emotion as I sat tearfully next to him. The practice would bring more torture for me. The year before I was a strong contributor to a solid, developing team; now I wanted out and to be free from the hostile environment. 

My plea for release was legitimate to me. I loved baseball, had done well the previous season, and I believed I had a future as an athlete. But my new coach told me I had no role on this team. 

“If I didn’t have to play you the minimum amount, I wouldn’t play you at all.” Coach Dave spoke directly to me as I sat in the dugout during one of the first practices of the new season. I sat silently, stunned by the harsh, personal delivery of the words. The coach’s opinion of me quickly spread to my teammates. To me, this treatment was unfair, undeserveda personal dislike that didn’t sync with my play or my attitude. 

I didn’t quit. I stuck out a miserable season, playing minimally on a team that lost nearly every game. The atmosphere of that team caused something akin to fear in me.  The experience killed my confidence in the short term, but strengthened my will, and I learned the lesson that my father knew would be more valuable than sheltering me from hostility. I learned to face fear, and developed a strong will. It is a powerful memory, and a vivid teaching moment in my life.  

My early life experiences with sports helped me understand the critical importance of will in facing adversity. I was convinced that I could will favorable outcomes into existence no matter the odds. My objectives did not always sync with experts like college football recruiters and scouts. To them, the fixed limits of talent were dominant. I learned that vision coupled with action produces results. I broke records in high school when I wasn’t expected to start, and I finished my college football career as a captain on a Division I team. Like a lot of people, I enjoy exceeding expectations and surging past supposed limits.  

After college I continued to overcome limitations in reaching objectives. I joined the Marine Corps as an officer despite having no prior military experience. Over a 23-year career as a military officer I’ve encountered seemingly intractable problems. The complexities of combat are physically and emotionally intimidating. Through my experience, I know that the major determinant of success is the will and vision to win, even through the suffering, disappointment and frustration found in the environment. If you can only see yourself winning then you cannot lose.  Cultivating the will is a most critical action for someone experiencing conflict.  

Now I know that will is the most dominant factor in the struggle against brain cancer, where misrepresented statistics can lead patients, their caregivers, and even their doctors to unintentionally discourage successful outcomes by disrupting and damaging the will to fight and win.

I was diagnosed with Glioblastoma Grade IV brain cancer in 2014 and I have a message for fellow patients: You must first cultivate your will to believe that you are not a statistical data point but rather a population of one, unique and distinct like a fingerprint or snowflake. You are released from non-applicable statistics, free to utilize your will in determining the outcome to your fight. You are created unique and your imprint on the world is valuable. 

During our first meeting, the neuro-oncologist did not exactly say that I had a terminal disease, though it was clearly intimated in his bearing. The air in the treatment room at Walter Reed National Military Medical Clinic was tense as we discussed sobering topics: the standard of care treatment protocol for Glioblastoma, average life expectancy, and survival rates. 

Three days had passed since we received the pathology results and my wife Aimée and I were desperate for a lifeline. We struggled to realize the effect of the news on our young family. Our children, especially our two-year old daughter, were too young to understand even if we’d known what to say. The brain tumors removed from my left-occipital lobe were the highest grade of brain cancer, known as Glioblastoma Multiforme, or GBM.  

According to the American Brain Tumor Association, median survival for adults with GBM is approximately 15-18 months. The American Cancer Society predicts that about 25,000 people will be diagnosed with GBM in 2022. Currently there is no cure. 

Talking to the neuro-oncologist was frustrating. GBM is the most aggressive form of brain cancer and the standard of care presented by the group of doctors offered little hope. The chemotherapy medication was unlikely to check the tumor’s growth; though I’d had a complete resection of the tumor, a recurrence was likely. This is how GBM, even when operable, continues to threaten the patient’s life.  

I pressed with questions looking for hope. A military officer, I was looking for the enemy’s flank – a weak spot that I could action and exploit. I was looking for hope and wanted the doctor to give it to me.  

This was a fight, a struggle against an unpredictable and unseen enemy threatening everything I valued. I’d faced seemingly insurmountable causes as a leader. I believed that this enemy had a flank and I intended to find it. 

“Tell me about the data,” I asked. “What is the population used to determine the statistics?”  

The doctor looked at me without emotion and stated that all patients diagnosed were in the population. “These are the numbers,” he insisted.  

It was impossible to estimate the influence of even a fraction of the possible factors. But I wanted to know, “Do these statistics, these numbers, reflect any particular segment of the population? Did these numbers reflect a breakdown of the data in any way? What do these numbers have to do with me?” 

“No other factors,” I repeated, “My age, my relative health, my tumor location, my mindset – none of these are used to differentiate the data points?”  

He shook his head no. 

That was it! I had identified a flank. I declared it to the room: I completely disregard the statistics, the odds, the averages and the life expectancy numbers; all the other outcomes were non-applicable to my case. 

I am my own statistical population; I am a population of one! And so are you. 

On a warm September morning we stood on the back deck and cried on each other’s shoulders. We moved inside and cried on the couch. We had just finished the phone call with my neurosurgeon and learned that I had Glioblastoma brain cancer, and were experiencing the resultant fear, anxiety and despair that heartbreaking news.  

I mustered a handful of words to express what I felt. 

“This will not shatter us. I am still here.” I tried to reassure Aimee but I didn’t have any practical knowledge that what I said was true, just my own determination.  

We both knew the severity of the diagnosis and were desperate to hear that effective medical treatment might help us. In the days leading up to the call, we’d been praying for a benign tumor, so we might put this behind us and move on. I wanted to plan the future. 

It is an interesting and often useful drill for those stuck attempting to make life choices to imagine they have only a short while to live, such as one day, or a week, a month, etc. What would you do with such limited time? You would focus on spending it according to what you value. For many people it is with family. For others, it is jet setting around to see and do the things outside their reach and check off items on their bucket list. I can die now, having finally been to Paris!  

A cancer diagnosis immediately affects perspective on time. The future is even more unknown to someone with a life-threatening disease. At 41, I was primed for future challenges and the next state of being post-military service. I understood the importance of priorities in decision-making, as well as how sacrifice can be necessary in struggle to enable successful outcomes. For most of my service, the Marine Corps was extended across the globe engaged in conflict. Somewhat miraculously, I safely arrived on the far side of this time, transformed by the experience. Both my personal and professional futures appeared an unexplored land of possibility.  

Naturally, patients want doctors to reassure them that they have time left to live. Unlike our friends, family, or pastors, oncologists are generally not purveyors of hope. The grim and sober persona I experienced during my initial consultation after being diagnosed with Glioblastoma was deliberate.  

Many oncologists that treat patients with high-grade brain tumors understand the critical role of the will in patient survival. Still, the questions aroused by diagnosis beg for answers, though they transcend the physical world of medicine. The oncologists get the questions about life expectancy but can’t provide the answer, just numbers.  

These statistics feed the fear the diagnosis sparks in everyone, and this crushes the will. I am not alone in expecting the doctors to give us answers. We need something to grasp and cling to. We are looking for hope.  

I knew I wanted to see my children grow up, realize their potential, and have a fulfilling life. I wanted to be there to serve as the father they would need as they navigated the obstacle course of growing up, and to love them and support their journey. It was terrifying at first to consider that I would not see any of that future. 

But my fear quickly turned to resolve. I would not, based on who I was and what I knew about struggle, give into fear. I still planned to live to be 100.  

When I realized that I was free of the numbers, the averages and statistics, the enemy’s flank, I knew how to exploit it and overcome the fear. My will, and subsequent actions, resulted not in fear, anxiety and despair, but resolve. 

Aimée and I spent the interval between receiving the news and meeting the doctors in prayer and recovery, but also doing what most people would: we went online looking for clues to this disease. We tried to filter out the negative reports but the statistics and averages presented were ominous, and impossible to ignore. It is reasonable to conclude based on this cursory research that resistance is futile. 

We are now members of the brain cancer community, including the dedicated professionals and supporters on daily duty against the disease. Aimée and I are often connected with fellow GBM patients and their caregivers. Not long ago we were on the receiving end of this network, searching for options and now we are the ones sharing what we know. It is troubling to hear, as we often do, patients and caregivers use terms such as “terminal” to describe their state. 

It is frustrating to hear talk of false hope to describe a fragile mental state. This type of language is unhelpful, and can destroy a patient’s will. By this logic, it is more painful and disappointing for patients with aggressive diseases to consider the future and make plans than to accept their fate. It is tempting to sink emotionally and mentally into a bog of woe.  

My message to those receiving difficult news: you must not fixate on what you may see or hear online; do not allow this to enter your mind and erode your will. The patient must cultivate their will and visualize a successful outcome.  Everyone supporting them must encourage and enable the will of the patient. Do not use words like “terminally ill” and “false hope.” There is no room for negativity on the team. Do not conform to this mindset if you want to survive. What does it even mean to have a terminal illness? We are all terminally ill as long as we are on Earth. There is no hope in talking about carrying around a terminal illness label.  

Anyone that quotes, repeats, emphasizes, cites, or believes in statistics as predictors of a particular patient’s unique outcome is doing a disservice to the patient.

On August 21, 2014, I got up from the CT scan and the tech told me to have a seat in the waiting room. I sat down and immediately looked up to see the radiologist standing in front of me, and next to her another man with a wheelchair.  

“I’m so sorry to tell you this,” she said, “but you have a mass on your brain. You shouldn’t be driving, and I’m going to send you to Bethesda where they have neurosurgery.” 

I laughed. I was actually happy to know that through medical technology, we figured out what was wrong with me, and what was causing the vision and reading problems I’d been experiencing for months. Now, I reasoned, doctors could fix the problem. Surely at this point in human history we’ve figured all of this out! I had confidence that all would be fine. 

I had no idea what I was facing but I had faith in medical science.

As a patient, responding to a diagnosis such as GBM is intensely personal. A GBM diagnosis is life changing, disappointing and often heartbreaking for all who care for the patient. 

Like a public starved for news during a crisis, patients want to know what to expect. What kind of plans should we make? How much fear does this rate on a scale of 1 to 10? We want numbers! 

Neuro-oncologists are on the frontlines of a fight that never stops. When I asked my doctor how many patients he had like me, he replied that he saw 3-5 new patients every week. According to Duke Cancer Center, they see about 900 cases per year. 

There is great value in statistics, particularly to the researchers searing for a cure for cancer. Scientists are desperate for a cure for brain cancer, repurposing drugs as treatment methods, using unorthodox and innovative approaches.  Researchers in clinical trials and manufacturers must use statistics to allocate resources and determine appropriate treatment.  

But the numbers must not influence a patient’s will. Once a patient views their case as terminal than it is, and the same is true for a caregiver.   

There is no hope in talking about carrying around a terminal illness label. After all, what does it mean to have a terminal illness? Last checked, science has not cured death. News flash: we are all “terminal” here on earth!  

What we don’t know is time. But your time is short no matter what. Making the most of what you do have is the key. And a mentality of certain, imminent death will lead exactly to that. 

I learned and believed immediately in my unique and distinct case and the value of this mindset. 

The will is the most powerful thing a patient has when they first encounter this diagnosis. 

Knowing this freed me from the grim numbers that surround this disease. 

If a patient views their case as terminal then it is. Same is true for a caregiver. 

I stood at the podium and faced the Board of Advisors of the Preston Robert Tisch Brain Tumor Center at Duke.  I was fortunate to address this wonderful group of doctors, nurses, fellow patients, caregivers and benefactors.  It was October 2018, over four years after my initial diagnosis of GBM. 

“You are more than a world-class brain tumor center,” I told them. “You are a community of hope, a brand that inspires.” 

I told them that they were courageous for taking on a challenge that many would see as insurmountable, and that fear is as much the enemy as brain cancer. 

During that day in October, I had the chance to sit in on the meetings the board held.  It was filled with updates on treatment and recent breakthroughs.  I met fellow patients, some of whom were over 15 years from their diagnosis. 

No one used the term terminal disease to describe brain cancer. 

During my opportunity to speak as the keynote at the dinner, I shared how I responded to my diagnosis:

“I think I’ve changed for the better. I’ll never say I’m grateful for having brain cancer, but it’s changed me and made my life significant in a way I never expected.”