Everyone has at least one moment in their life that they will remember with absolute clarity -- that point in which time stands still, and when the rest of the world seems to disappear, leaving only you. The most prominent of mine are the moments in which I was told that the doctors had finally found out what was causing all of my health problems, and what needed to be done about it.
The first time I experienced this was I the early afternoon on October 17, 1977. I was 14 years old. The last two years of my life had been a blur of unexplained symptoms (vomiting, weight loss, vision problems, painful stiff neck, dizziness, loss of consciousness, and both hands curled into fists due to profound muscle weakness and loss of control) and visits to more specialists than I can remember -- neurologists and neurosurgeons, orthopedic surgeons, rheumatologists, psychiatrists. Two years of tests that failed to explain anything. And two years of fighting to convince just one doctor that the problem causing me and my family so much misery was physical in nature.
At this moment, however, I had no memory of any of that. All I knew was that I was flat on my back on a hospital gurney, which had been placed into a small waiting room painted that particular shade of institutional green found exclusively in. I was in such severe pain that I was fading in and out of consciousness -- my cheeks were flushed and still wet from my tears. I had just been wheeled out of a radiology suite at Children’s Hospital of Michigan, where my neurosurgeons had performed a myelogram so they could examine my spinal cord for abnormalities.
After being left alone for a few moments, I heard a jumble of voices approaching. There were very few people I wanted to deal with at that point, so I shut my eyes tightly in self-defense and pretended to sleep until I could figure out who was approaching and what they wanted from me. As the group took their places around my gurney, I recognized that my mom and dad had taken up position on my left while my two neurosurgeons stood to my right. They were already deep in conversation as I felt my mothers soft hand reach out and rest across my forehead, a touch she had used to comfort me for as long as I can remember.
Within moments after gathering around me, the doctors announced their findings. “There is a large mass compressing her spinal cord. It’s quite long, and almost completely blocked the flow of the contrast material. We believe this is a cyst, and immediate surgery to drain it is warranted. The surgery is scheduled for Wednesday morning sat 7 am.” My mom choked back her tears and my father let out a deep, sad sigh before saying, “Thank you, doctors” in that tone of voice I now recognize as his logic voice, the part of his brain that takes over whenever his emotions threaten to overwhelm him. Those we the last sounds I heard before I let the shock from what I had just heard and the pain from what I had experienced carry me of into unconsciousness.
I remember very little of the time between hearing I needed surgery and being prepped for the OR except that I spent it flat on my back. (A significant amount of cerebral spinal fluid was withdrawn during myelograms performed at that time, so it was necessary to lie flat for 16-34 hours after the procedure while the CSF amounts returned to normal levels or risk debilitating headaches and other problems).
The morning of my first operation ever, my parent’s minister came to sit with us in the early morning hours before I was taken to the OR. I recall the relative quiet of the hospital at that early hour. I also remember how my mother, father, older brother and I were all equally nervous, sleepy, and upbeat, each doing his/her best to put on a brave face for the others.
Fast forward 24 hours. I was in the operating room for just over 14 hours, and awoke in the neuro ICU unit. My mother was at my bed side, just as she would be for countless days following the surgeries to come in the years ahead. After helping me take inventory -- this was the first of many times I would ask if my toes were moving and break into joyful tears when I learned that they were -- the tone in the room, and the look in my mother’s eyes, switched in a heartbeat from relief to apprehension and sorrow as she prepared for one of the most difficult and disturbing conversations any parent can have with their child.
Over the next hour, my mom broke the news to me that my surgeons had been wrong -- the mass they saw on the myelogram wasn’t just a cyst, it was a tumor called an astrocytoma. The doctors believe it could have been present from birth, growing slowly enough and remaining small enough to avoid causing any problems with or damage to the spinal cord until the tumor bled from the top. This bleed formed a cyst, which is what caused the stiff neck and vomiting/weight loss/vision problems -- as the bleeding subsided and the pressure from the blood-filled cyst eased, the symptoms it caused all but disappeared. A year after the upper cyst shrunk down, the lower portion of the tumor bled -- the cyst that developed caused me to lose the lose of my hands until it, too, stopped bleeding.
The news that it was malignant was saved until after the story of how this invader had ruled the last two years of my life was complete. Only then did my mother tell me that the tumor was cancerous, and that my doctors weren’t able to remove it all because it was so intertwined with the nerves of the cord.
And that was the moment that the earth stood still -- for the first time. I had to go through hearing the news that this cancer was living inside me two more times. And each time it was the same: the earth and time stood still, all sound vanished, there was nothing except me, the tumor, and the unknown.