It was twenty years ago this weekend. We measure our lives in milestones of growth and landmarks of experience. Goals aspired to and milestones passed, that show our progress to a destination; be it physical, emotional or spiritual that we have set for ourselves. Others are little more than unset markers of places in the arc of our lives, that we’ve reached at some moment in time. These markers often represent the culminations of efforts, but more often than not, they are just counting off the passage of time. Another notch in the handle of our lives, and for those that contemplate it, another number subtracted from the roughly three billion heartbeats the average human heart will tone in a lifetime. Some are mundane, banal occurrences, others profound and the source of memories that can never be forgotten. My tenth birthday when I got my first REAL bike. My 20th when I spent it in a sweltering monsoon in a foreign conflict, a day that passed without thought of the event, as there was chaos reining around me that usurped any room for other thoughts. Many more of those that just chronicle the passage of time of a life have come and gone. Today is one of those for me.
January 6th, 1998 I had my last radiation treatment at MD Anderson Cancer Center and rang the bell on the wall. Here I am at a two-decade milestone, one that I never thought I would reach. For sure it is a cause for some measured celebration. At the time, I never thought I would get to a place very far from the diagnosis, as the treatments were brutal by today’s standards, and my disease very invasive and well developed. When that bell’s tone rang through the waiting area of the radiation department, though this part of treatment was complete, I was not done; and still suspect nodes in my neck were yet to be dealt with by a surgeon’s knife as I had had the maximum allowable dose of radiation for a lifetime. Given the unknown etiology of my disease, and the very advanced state at time of discovery – metastasized into both sides of my neck, things still seemed dire. The doctors lack of experience in dealing with it, and their refraining from speaking much about my future, despite the quality of the institution where I was, was partly due to their lack of long-term survivors to judge from. That left their optimism about my future guarded to say the least. It seemed then, that being here many years out from when a few cells decided to join the dark side, was not something either of us expected nor planed on. I just wish to digress for a moment to explain the distance I, and actually all of us who are survivors of this disese, have come from that point in time.
In 1997, oncology medicine had no clue that the HPV16 virus was causing ANY oropharyngeal cancers, those of the tonsils and base of tongue specifically. Because of that etiology’s cryptic presentation, one without visible lesions which characterized all oral cancers that we knew of at the time, I was part of an observed mystery to my oncology team, a team held in the highest regard at the number one cancer institution in the United States. They had seen a few others like me, but they had no idea why younger men, with no connection to the usual culprit tobacco like myself were showing up on their doorsteps with late stage cancers. Ones for which they could not even find the primary location. We had “unknown primaries,” and very discernable, positive for SCC, neck lymph nodes. The only thing they knew for sure in those days was what is still true today, cancerous positive cervical nodes are never the primary, they are a metastasis from somewhere else. Even in many people’s scans, that “someplace else” was not apparent or discoverable. The only treatment solution to that paradox was a HUGE field of radiation, to hit everything that was even remotely a possible location. For me that extended from my zygomatic arch bones under my eyes to the clavicle bone on my chest. Talk about a large field of radiation…..
Radiation delivery then was far different than it is today. It was not well targeted, and lead blocks that matched the contours of my brain and spinal cord were what kept the deadly beam from destroying those irreparable vital tissues. The understanding of all the important minor places that were likely not cancerous, but still fell within the radiation field existed; but there was no way to map the beam around a cluster of nerves that controlled my systemic blood pressure located in the carotid notch of my neck, nor those that controlled my swallowing reflex in my throat, and many more such anatomical sites. So the uniformity of the radiation beam path passed through and destroyed everything, both good and bad, as they knew the tumor primary had to be somewhere in that field. The idea at the time was the state of the “art.” It was a carpet bombing equivalent idea; an idea where hundreds of bombers deposited their deadly cargo from the skies on a single city at the same time, reducing the entirety of it to ruble in WW2, and created firestorms that raged for days killing the last of the inhabitants be they man, woman, or child that the explosions themselves had missed. Needless to say, the collateral damage to vital structures with this approach was significant. Ironically for me, the very adaptable and flexible IMRT method of rad