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. 

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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