The way my husband lived with dying somehow took away all my lifelong fears—all but the fear of his suffering and of his death, and of life without him.
He planned a final family vacation for us during his last season. Short months before his diagnosis he had finally coaxed me onto a plane with our daughters, and I was still white-knuckled with terror of flying. Although he wisely did not forewarn me that each leg of the final family-of-six trip would involve four separate plane rides, I discovered that after four decades I was no longer afraid of flying.
He needed someone to be able to give him subcutaneous injections at home when he no longer could do it, and he needed carefully-mapped sequences of injections through his port. I discovered then that I no longer was afraid of needles. How could I be, after what he had been through?
He needed to know I’d be able to handle the complicated finances for getting four children through college, and I very nearly conquered my fear of his elaborate financial computer system.
He was not afraid of his own death. I never got there, but, as he told me, the two of us are made of different stuff.
More than a year ago, after my husband was diagnosed with pancreatic cancer, I began writing. At first I wrote about appointments and logistics, then immense disappointments and more logistics. Eventually I wrote much more as I waited at appointments, and waited by my husband’s bedside. Some people who read my expanding missives, posted for a private community within a larger site (Lotsahelpinghands), began identifying them as blog entries. They suggested that I share them with a wider circle.
I’d like to start here, now, long after the end of the medical portion of this ordeal. Today marks exactly one month after what would and should have been my husband Jim’s birthday. In honor of him on that occasion I gave a talk at the hospital where he was the first Chief Medical Officer. It was about our family’s experiences in the treatment of a dying physician, and about the treatment of seriously ill patients (physicians or not) known well by a treating physician.
Before speaking to the group of physicians I circulated some of what I have written for my children.
The day after the talk, a physician who had been there and whom I did not know wrote to say he works with nursing home patients. He thanked me for sharing our experiences and helping him to “open a door” that he said is easy for physicians to keep closed, even–and maybe especially–among the constant presence of dying and death.
His comments give me hope that the worst of our experiences can lead to some good.