Derailed. My heart pounded loudly in my head. More loudly than it usually did. I felt a wave of nausea and suddenly faint. He watched my face I took a deep breath of my inhaler. My reaction was deep and visceral. I stared at the white 8 1/2X11 inch paper in my now shaking hand. I wanted to scream but my daughter was outside in the waiting room. It was not a surprise. We had just looked at my latest blood work. We just discussed how hard it was to for me to breathe, how my blood pressure was 102/58. How my kidney’s were dumping more fluid than I could keep down. How I was lymphocytopenic and with a high neutrophil count from the chemotherapy and steroids. How the Lupus symptoms refused to abate, the inflammatory markers were high, my vision was blurry, my joints ached, my head pounded…But I looked great. He smiled at me as that is the running joke in Lupus. You look great the sicker you are. I thought I was at peace. Yet now I felt destroyed. In my hand I held an official New York State Do No Resuscitate Order. I had held this piece of paper countless times in my career, this time it was mine. Basically it is in my best interest if my heart stops to not intervene. The disease Lupus was trying to kick my ass. My warrior body was kicking back and Robin in the middle felt caught on the battle field. And somehow this white piece of paper and three letters was flipping me upside down.
I rode home staring out the window locked in thought. I began the internal mental battle. What the fuck was I doing. A piece of paper was not going to sink me. Getting out of the car and the heat and humidity waived its miserable flag and my lungs seized. It certainly was not six hours from the last two puffs. I sucked in two more hits from my inhaler, shaking my head at myself and how many times I silently criticized patients for not following their doctor’s directions. I crawled up the two flights of stairs to my room maintaining my game face until I was alone. The floodgates opened. Sleep finally took over.
Three hours later, I awoke to the shake of a hand. “Are you ok?” I looked at my husband with tear stained eyes and muttered a perfunctory fine. He knew I wasn’t. He waited me out. An hour later he held me. I wept.
Why? Why did this stupid piece of paper unnerve me so? My throat was tight with pure raw fear. Not one solid ounce of bravery. Nothing had really changed. I was just as sick or as I was working to reframe my thoughts well five minutes before I looked at that paper as I was now. I was vital and alive. I closed my eyes and dug into my tight lungs and took a deep breath. I reached from my pilot light, to my cauldron to my heart looking for the sense of calm. The warmth that was so openly accessed Sunday night with wonderful women was fighting me. A curled into a ball and rocked and breathed a little harder and deeper. I reached for a memory and the warmth burned. My body reacted to my femininity instead of illness. I still ached. The tears still fell easily. But I started the inner plan to dismiss the power of a piece of paper. It was not my finality.