fostering the humanistic practice of medicine publishing personal accounts of illness and healing encouraging health care advocacy

fostering the humanistic practice of medicine publishing personal accounts of illness and healing encouraging health care advocacy

April 2019

Caregiver Unaware

My Dad is eighty-nine years old and has a glioblastoma, the same as former Sen. John McCain. He’s doing well despite his condition, and my siblings and I are surrounding him with support. Someone lives with him full-time, and we have a weekly check-in meeting so we’re all apprised of his current condition and contributing to his health. Based in our home town, my brother and sister are his primary care team; I live two-and-a-half hours away.

In February I traveled there to work from his home for a week. First thing Monday, I took him to a progress appointment with his neurology team. Coming in from the outside, I had almost no current knowledge of his condition or medications. Because of that, I was unprepared when the staff person at reception handed me a sheaf of paper on a clipboard to fill out by hand. I asked her whether it was necessary since my Dad’s entire medical record is with this one large health system; she confirmed that it was. 

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The Waiting Game

My first three breast biopsies resulted from self-examinations that revealed a lump in my breast. The fourth—and, so far, final biopsy—came after my surgeon felt a mass in my breast during a routine check-up.
Each biopsy brought its own trauma. For biosies one and two, I had to find sitters to care for my two, young children. For biopsies three and four, I had to arrange lesson plans for my substitute teacher. I had to ensure that a family member would be with me during the out-patient procedures, and I had to gear myself up for the IV and anesthetic, both of which scared me more than a Halloween haunted house. After the biopsies, I had to be extra careful about doing exercises or wetting the affected area.

But the profound repercussion of four biopsies was the not knowing: waiting a week for the test results to come back. 

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