Cancer patients remember dates. Its as if acquiring the disease comes with the fringe benefit of recalling individual months, days and years and their connection to personal health, strife and emotion. The dates are markers, names if you will. Akin to calling your best friend Joe, when Joe is merely how you refer to him, but your friend is so much more. The date is how we classify the moment when everything changed.
Tuesday, September 6, 2011.
Reaching for the door to the Peter B. Lewis building on the campus of Case Western Reserve University, on my way to a Master’s class en route to an MBA. A pulse, intense ringing in my ears, dizziness, numbness. What the fuck is happening. Instead of entering the building I sit on a nearby bench, a preferred alternative to falling over or sitting straight on the ground in front of the door.
Another pulse, more intense, louder ringing, heavier dizziness, I can’t feel my arm. Why can’t I feel my arm? This will not pass, this is different.
A phone call to my wife at the time, Heather, provides no relief, she is busy and doesn’t hear the phone ring. Another phone call, this time to my father, who is at my house. An answer.
“Dad, come get me, take me to the emergency room.”
“Yes I’m OK to wait, just come get me, bring Heather if you can.”
“No I don’t know what’s wrong but here’s what just happened…”
The ride to the hospital is an exercise in confusion. I can relay the facts but can’t put them together. We can see the puzzle pieces but can’t make out the picture. Hillcrest Hospital, close to home but a thirty-minute drive from campus. It’s comfortable, inside this hospital, on a different floor, is where my life began just over 31 years ago.
The first of what will become several bracelets is placed on my wrist. Cancer bling. Questions, tests, more questions, more tests. Doctors come and go, introduce themselves, give their qualifications, explain their exam then disappear. Everybody is nice, nobody is personal. They are different people yet meld into the same, like a strange multi-headed medical unit shuffling around the hospital, stopping into rooms to have people raise their arms or walk in a straight line or tell them what you see, then disappearing into the ether behind the curtain and coalescing into the conglomerate doctor once again, never looking the same when they re-enter for another test.
A CAT scan, followed by an EEG. Vitals are taken. “Is your pulse always low? Are you a runner?” Yes, I’m an athlete, no I am not a runner, (yet).
“You either had a stroke that we can’t detect or you have multiple sclerosis, we will confirm in the morning when we perform an MRI.
“For now try and get some sleep.” Sleep, no problem, I’ll just roll over and doze off. Can you wake me for the MRI so I don’t sleep through it?
A Wednesday morning MRI… stroke or MS, stroke or MS? Try a look behind door number three.
“You do not have MS and you did not have a stroke. The MRI revealed a brain tumor, roughly the size of a golf ball or maybe a lime, behind and above your right ear.” It looks like a glioma, I can’t tell what type from the MRI but that is my best guess.”
Why is cancer always sporting goods or fruit?
When I was four years old I fell off a playground railing and suffered a compound fracture and dislocation of my right elbow. I remember walking to the car with my grandfather and sister, screaming, desperately trying to cry, but I was unable to cry. No matter how hard I tried, despite looking down and seeing my arm on backwards, I could not cry.
That was the last time I experienced shock, I found myself there again, except this time I did cry.
Laying in the hospital bed, Heather by my side, tears rolled silently down my face. I knew nothing about brain tumors, yet I knew enough to know that life as I had come to know it was over. Nothing, ever, would be the same.
As a coach, one of the basic tenets I follow is that you can’t tell anyone anything. To truly teach someone something important the lesson can’t be told, it has to be felt. Until it is felt, it won’t be understood, the lesson is just a story that applies to someone else.
Tuesday September 6, 2011, the name of the day when I felt the reality that I am mortal I will die.
The tears never became intense or dramatic, they lasted a few minutes, not sobbing or wailing, instead a deep sadness the likes of which I had never felt. It was sorrow and shock at once, not wanting to believe the news, and knowing that this was my new life. It produced a physical reaction, not just in the pit of my stomach or the active tear ducts, but my whole body. My extremities felt detached somehow, as if my physical body was disappearing and all that was left was my soul. I felt sorry for myself, felt the sting of being cheated out of those things young people insist on taking for granted.
Most times we are able to bury the thought of our own death. Who hasn’t been struck at night, just before sleep, by the fragility and relative brevity of our own life? Who has not lost a random hour or two of sleep contemplating how insignificant and short our lives truly are? And who hasn’t eventually swept the thoughts aside, falling asleep only to return the next day to life and its minutiae, escaping the thought of our impending doom with the trappings of everyday life?
To have cancer is to necessarily take up the fight response to the thought of our own death. Yes, some nights sleep provides a brief respite (some do not as cancer has a way of infiltrating our dreams, an experience as nasty as it sounds) but when consciousness returns so does reality. Awakening and starting a new day does not hold the same ability to sweep thinking of death under the proverbial rug as it once did.
So after a few minutes of crying, my emotions took a turn. I would love to tell you that I have an iron will and that I became determined to win, that my resolve was steel and I had no fear because I had no doubt that I could overcome this illness. If I told you that I would be lying.
I was terrified, I still am. My emotional reaction was something I witnessed, not participated in. After the tears, came anger, a rising anger born of fear and evolution. When presented with a threat, we flee or we fight, we deny or accept. In that moment, my body and my subconscious knew that denial was futile. Cancer demands to be dealt with, because it will surely be dealing with you.
What I had to overcome was the first coherent thought that arrived in my head; three years, I have three years. The time span had no basis in fact, I had absolutely no knowledge of brain cancer or my personal prognosis. To be sure, surviving three years is miraculous for some brain cancer patients, a huge disappointment for others, and at that time there was no way to know to which cohort I belonged. In that moment, when the doc told me I had a brain tumor, the number I gave myself was three years.
I believe now that the time was irrelevant, the actual number. My brain was searching for something it could understand, because chaos and my own demise are not concepts I am equipped to deal with, none of us are. Paths that have no direction or end are not easily understood by human beings. Are they even paths? So it is with a yet-to-be determined type of brain tumor that we can’t do a whole lot about once we do know what we are dealing with anyway. In that moment, one where confusion and despair were swirling like fall leaves on a windy day, I reached into the darkness and grabbed onto three years.
Thankfully three years have come and gone, but the fear of that moment has remained in the foreground. Am I three years from dying of cancer right now? One? 25? It’s the not-knowing that amplifies the effects of the disease. Yes, everyone will die, most are afraid of it, there is no escaping death.
But in 2011, at 31 years of age, I was not ready to make escaping death a conscious and constant endeavor.
All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer. If you have a story or experience you would like to share with the cancer community we would love to hear from you! Please submit your idea at https://elephantsandtea.cdn-pi.com/contact/submissions/.