Multiple Mets and No Primary
December 21, 2017 is a day that I'll never forget. It's the day my life changed forever with a phone call and a chasm opened up separating my life forever into a pre and post-existence as my old world burnt down. The exact moment everything changed is perfectly frozen, a pictograph of shock and despair permanently etched on the walls of my mind.
The results are back
It had all started innocuously enough the week before. A lingering pain in my ribs had led me to seek a consultation with an orthopedist. An x-ray had revealed a broken rib and what appeared to be a mass behind it. After reviewing my film, my primary care physician Dr. T ordered an MRI of my torso. Forty-five minutes after I got home the phone rang. When I saw it was my Dr.'s office calling my heart fell flat. A powerful sense of dread fell over me that something horrible was about to happen. My instincts were not wrong.
Dr. T wasted no time, "The MRI results came back...it's bad Scott, really bad." It took all I had to whisper, "How bad?" As I listened to the litany of all the places the cancer had spread, spine, ribs, shoulder, pelvis, and skull I completely lost control of myself as if I had gone over a waterfall and was being tossed in the rapids below. All I could say through my sobs was "...oh no, oh no, oh no..." All my worst fears had come to life out of the blue. Gradually I became aware that Dr. T was calmly repeating my name over and over, "Scott...Scott...Scott." I struggled to regain some sense of control and finally managed to respond, "I'm ok, what's the bottom line? What do we do?" "Bottom line", he said, "I think you have a highly aggressive, fast-moving malignancy with extensive metastasis and no primary. We've gotta get in there. We have to move on this right away."
How am I going to tell my family?
In those moments, all my hopes plans and dreams caught fire and burned in the white-hot terror of my diagnosis. From all that I had ever read, or heard about cancer it certainly appeared that this was a worst case scenario. I was utterly devastated and in complete shock. Robot-like, I wrote down the time that Dr. T wanted me at the hospital the next day for additional testing, thanked him and hung up. It was four days before Christmas...how was I going to tell my family.
It was then, at that moment, as I squared off and faced the most fundamental of existential threats that I hit rock bottom...and in so doing, began to accept and process my diagnosis. "I'm going to die." I thought as a cold certainty settled over me and a fear long held became what seemed an unavoidable new reality. The battle lines were drawn...the stakes settled. Clearly, anything I did from this point on was for all the marbles. Without consciously knowing it, I was beginning to intuitively embrace what I would later learn was radical acceptance. The situation was what it was. The point now was what was I going to do about it?
Understanding my diagnosis
While tremendously unpleasant, learning about my cancer in this way and in this context actually has helped me enormously over the last year. As additional testing further refined our understanding of my situation and it became apparent that while I was still very, very ill, my death was not as imminent as first thought. A great weight was lifted from me. Having been forced to make peace with the possibility of a very rapid demise, everything else that came later was so much easier to accept and deal with. Although I didn't know it at the time, I had been strengthened and my resolved forged in the devastating crucible of shock and despair
Myeloma is all about uncertainty. All of us that suffer from it as well as our caregivers and family understand and live with this. That being said, I am able to face that uncertainty now with an antidote of my own making. I may not know what my myeloma may bring to my life next or what new challenges may develop that I will have to confront and that's okay. For what I do now know with utter confidence is that whatever path opens up for me, I will be able to face it with steadiness and resolve.
What type of blood cancer are you or your loved one diagnosed with?