The Vanishing Life: Reflecting on My Time With Desmoplastic Small Round Cell Tumor (DSRCT) sarcoma

¹³ Come now, you who say, “Today or tomorrow we will go to such and such a city, spend a year there, buy and sell, and make a profit”; ¹⁴ whereas you do not know what will happen tomorrow. For what is your life? It is even a vapor that appears for a little time and then vanishes away. ¹⁵ Instead you ought to say, “If the Lord wills, we shall live and do this or that.” ¹⁶ But now you boast in your arrogance. All such boasting is evil. – James 4.13-16 (NKJV)

You know when I became the most acutely aware of the reality noted in James 4 (particularly the emboldened part)? It was when I was dying from a ‘terminal’ incurable cancer called Desmoplastic Small Round Cell Tumor sarcoma (DSRCT). This was back in late 2009, and almost the whole of 2010; many of you are aware of this season in my life. For the rest of this post I want to reflect back on the perspective that came as a result of walking through this time of the ‘shadow of death.’

After I realized exactly the gravity of what I was facing, what we were facing as a young family, the world took on a whole new hue. I can remember on a cold clear winter’s night going out to the car parked on the street, and doing something as mundane as putting oil in the car. I remember standing next to the car, and then looking up into the heavens to see the starry host all about; I can remember thinking how strange life is. Here I am doing something as mundane as this, and contrasting that with the reality that statistically I was facing an untimely and unseemly death; a death that would take me from my beautiful wife, and two young dear children—this was the most hellish thought of the whole thing to me; I could not bear it! But there I was, next to my car with the hood open, looking up into the dark sky as it twinkled with the shiny stars reflecting the winter’s Sun. I consciously thought of King David, in the moment, as he penned Psalm 8, as he too looked to the heavens, to the stars, and in their light wondering ‘who am I that Thou wouldest think of me, a man, Oh LORD?’ I remember in that moment, like Elijah hiding from the world in the darkness of a cave, God’s clear small voice piercing the darkness of the season, and saying ‘I am with you, Bobby, I love you, I will never leave you or forsake you; it is going to be okay, be not afraid.’ I remember being overwhelmed, in that moment, with the peace of Christ; being overwhelmed with the immensity of His presence, and making a connection between that, and the starry host above. I remember thinking that if my God could speak and all that I was seeing above simply leapt into existence by His powerful Fiat, then the cancer inside my body was of no consequence for Him.

Later, as I had been severely battered by the chemo—and I mean to the point of being right at death’s door—as my wife and I were driving to a local Fish House for lunch, I can remember looking around at all the people in their cars, zooming here and there, living life, I can remember feeling almost translucent. I almost felt, in a concrete way, like my soul had already detached from my body, and I was no longer a part of the land of the living that all these people around me seemingly were. I’d have to say this was one of the strangest experiences I had during this time. It is not easy to explain. I was full of utter shock, and it seemed as if my life of thirty-five years was simply vanishing away before my very eyes, as if it had almost vanished, except I was fully aware and conscious of it. I felt James 4 in a tangible way in this moment of time.

Another time I was in the hospital, I think after my 5^th cycle of chemo. At this point my body had been shredded by the extra hard chemo regimen I was undertaking. I was admitted to the hospital this time, for eight days. This became the normal thing for me; post chemo I would have to be admitted into the hospital simply to keep me alive with blood transfusions and other fluids (and drugs like morphine to try and manage the pain). All of these times have sort of blurred together for me now. But in one instance, I can remember being wheeled down in my bed to a hyper clinical and sterile room where they had to do a CT-scan on me. I received many CT-scans, but this one was special, as I recall. I don’t really remember exactly what this was for, but they needed to get it done. I was in a state of neutropenia, and so very susceptible to picking up sicknesses, beyond the neutropenic fever and C-diff I already had. So, this CT room was designed for folks like me, cordoned off from the public. My wife could not even go with me at this time, so I was all by myself. I remember being wheeled into this big white room full of stainless steel everywhere, and I was just left to lay there in the heavy pain I was struggling with; and the state of shock I lived in during this whole season. Finally, a single CT-tech came into the room, and she just sat there with me, talking with me. She was all gowned up, wearing a “bunny-like” suit, as if she was trying to protect herself from my toxicity; but more than likely she was trying to protect me from hers; or probably both. Anyway, in that moment, everything felt like Gattaca; it all felt very CLINICAL. Except for the fact that the CT-tech’s warmth came through and provided a level of comfort to me. Beyond her warmth, Who was ever-present was the living God; He was assuring me in that cold white and silver room. While the stainless table I was laying on, thinly covered with a sheet, was cold to my touch, God’s warmth filled my soul, and the room itself, with a cloudy presence that I could only identify as a presence I had known all my life as a child of God; even though, in the calm and ‘normal’ days of my life I didn’t always recognize it as such. Placed into the chaos and crisis that the clinical space I had come into represented, God’s Presence in Christ overcame these sterile moments.

I have more reflections, but these represent some snap-shots of what I was going through during this seemingly never-ending season of my life. I didn’t know if I was going to make it, in fact my type of cancer said I wouldn’t; but my type of God kept telling me I would. My God was right, and I lived through what most others (with this type of cancer) don’t. I came to realize what James meant in living-color; I learned that life is ‘but a vapor’ that could at any moment simply ‘vanish’ away into the ethereality of my own shadowy existence; save Christ!