This is a guest post by Dennis Pyritz, RN, BA, BSN, who practiced oncology nursing from 1987 to 2004 and was active in local, national, and international ONS projects. He was diagnosed with a rare cancer—t-cell prolymphocytic leukemia in 2001 and again in 2004, achieving remission with Campath (alemtuzumab) and consolidating with an allogenic PBSCT. He is currently building an active cancer blogging community at his blog, and working on a book about the world of cancer blogging.
It's the little things that seem to shape my life so much these past few weeks. Little things that vex and uplift. I first began to consider these little things in the fevered beginnings of my H1N1 infection several weeks ago. Going to Las Vegas to speak about my leukemia and its treatment with Campath was sort of a big deal—the opportunity to meet new people, to make some money, to perhaps begin a longlasting relationship with a pharmaceutical company. Flying out to and back from Vegas was not such a big deal. Each of the four segments of my journey was a little thing. Yet during one of those segments I was affected by another small thing, something minute, sub-cellular even—a viral colony wafting down from the recirculating air duct above my head, right next to my reading light. The viral colony took root somewhere in my lungs and began to multiply.
And so a week later I find myself slumped in a wheelchair, facing the triage nurse in the emergency room of my hospital. Between coughs I answer questions about my recent symptoms, my medical history, and my current medications. Commendably I am efficiently whisked back to a treatment room. My assigned nurse arrives quickly and begins her portion of the assessment process. Under the cloud of my 104 degree fever, I again answer questions about my recent symptoms, my medical history, and my current medications. Little things the first time around now growing somewhat tedious. While labs are being drawn from my right arm and an intravenous cannula secured, someone from pharmacy arrives to review my current medications and, for the third time in ten minutes, my allergies. Each of these set of questions are little steps in a more complex, and now somewhat unfathomable (to me), series of processes designed to assure that my symptoms are accurately and efficiently diagnosed.
Nonetheless when the medical assistant arrives to once more review the data, I am perplexed when she asks "So I see you have diabetes." "No" I mutter—where did that comes from? "Sorry." A little later she asks "You're allergic to phenergan? (a common antiemetic)" "No," my wife answers, "he is allergic to fentanyl (a narcotic analgesic)". Each of these incidents are, in themselves, small things. But their import is starting to build. Having worked in healthcare for over twenty years, I am frequently in the position of defending our exceedingly complex healthcare system and its practitioners. But now I am less sympathetic. I have been out of the system for over five years. Part of the current national debate about improving the healthcare system involves streamlining and digitalizing medical records. And yet here I am in my fevered and weakened state, having to steer my way through a potential minefield of medical error.
My symptoms assuaged by morphine, Zofram, and acetaminophen, Tish having left for home a hour before, I am finally ushered up to the transplant floor. My white count has dropped due to the viral onslaught and so I am put on neutropenic precautions. That small thing in itself brings the anxious spectre of relapsed leukemia to my dimming consciousness. By the time I arrive at my room, my fever is returning. I commence to shiver and shake. The rigors increase in intensity as two floor nurses begin their own admission rituals. My medical history, please. Symptoms of this current illness. Medications I am taking. Allergies—duh! As the rigors seem to rack my entire body, I feel less and less cooperative with these two women who I would normally regard as colleagues. They have their admission procedures and they mean to see them through—tonight, this shift. I can hardly keep my body still. Yet I am asked to sign three separate documents. I begin to feel bitter, angry. What has become of my caring profession? Obsessed with procedural etiquette, their focus seems to have wandered from me, the patient.
And then I feel the touch of a hand on my shoulder. The nurse at my bedside begins to stroke my shoulder softly. My shaking seems to lessen in intensity. The other nurse sorts through her papers, occasionally asking questions. "Any history of cardiac disease? renal problems? mental illness?" My bedside nurse continues to gently rub my shoulder. I feel myself sinking. Finally I feel the courage to tell the nurse with the sheet of questions, "Not now. please. I can't anymore." It's the little things.