Two years ago
On Thursday, July 30, 2015, David was discharged from Lunder 10 at Mass. General, his last in-patient experience. Because he was a 27-year-old young adult and therefore an atypical hospice patient, (hospice, like leukemia, is overwhelmingly an old person’s experience), Good Shepherd Hospice accepted David as a patient while he continued active treatment at MGH to keep the leukemia at bay, receiving blood transfusions and continuing to take the chemo drug, hydroxyurea. I planned to continue driving him to Cox Clinic twice a week, though actually, we only went there two more times. The Lunder 10 discharge was scheduled for 11 a.m., but in true hospital-time fashion, we weren’t cleared to go until 4 p.m. Meanwhile, the hospice nurse, Luis, and a social worker, Robert, waited in our driveway until their shift ended. They went home and later in the evening a night nurse visited and we took delivery on some IV morphine cassettes.
A few days before David was discharged, my friends, Sarah and Birgit, helped me thoroughly clean the dining room in anticipation of David’s homecoming. A medical supply company delivered a hospital bed, tray table, oxygen concentrator, portable oxygen tanks, and a suction machine (to clear throat secretions. Gratefully, I never had to use it.) Moving the dining room chairs to the basement and replacing them with the medical equipment, and taking the leaves out of our antique oak table to convert it for sickroom duty, all made his imminent death more real, though nothing could really prepare us.
David appreciated not having to climb up and down stairs: the microwave and drink supplies were now in the next room. Our couch was just on the other side of his bed, so he could come in and watch a movie with us. I don’t remember if he ever did.
I spent at least three hours studying the procedure for giving David sterile dextrose water by IV. I read and re-read the instructions, made myself a spreadsheet with detailed and thorough, step-by-step instructions, reviewed and edited it over and over again. And still I was nervous every time I did it.
R’el brought two-year-old Andrew up from NYC for a four-day visit. Xiomara was due to have their baby any day, so she and Peter had to stay close to home. David enjoyed seeing his curly-haired nephew and Andrew reciprocated by being sweet and adorable.
David spent the rest of his time napping and reading
The Economist magazine and
Woman Warrior by Maxine Hong Kingston, our family book group selection. He did live long enough for the discussion, but didn't talk much or maybe not at all; because of his terrible throat pain he avoided talking.
And so we quietly prepared for the inevitable.
8 August 2017
Jim and I are at Zion’s Camp in Raymond, New Hampshire. Originally owned by the Boy Scouts, our church bought it about 15 years ago and converted it into a regional Young Women’s Camp. With a waterfront on the shores of Lake Onway (having spent many years as a Girls’ Camp waterfront director, I appreciate a well-appointed boathouse and swimming area), a large dining room with a commercial-grade kitchen, both rustic and electrified cabins, an archery range with girl-size bows, and a rifle range with girl-sized rifles, it’s much different from my Girls’ Camp experience in Sharon, Vermont, thirty years ago, where we camped in tents, cooked over fires, and did crafts beneath large blue tarps in the rain.
I haven’t been camping in years, and it is bringing back fond memories of hiking in the woods, roasting marshmallows over a campfire, and swimming in lakes or the ocean.
As I walk through the woods and look down at my old sneakers, a vivid memory of my old hiking boots comes to mind.
On November 5, 1995, I went psychotically manic. I was extremely paranoid and agitated. My whole personality changed: Jim didn’t recognize me and asked some friends to take me to their house, away from our children. After some time in the local emergency room, I was transferred by ambulance to a locked psychiatric unit at Waltham Hospital (more on this in future posts).
By summer, I had weathered an intense bout of bipolar depression. R’els Young Women’s leader invited me along to help on a two-day canoeing trip down the Saco River in New Hampshire. I was thrilled.
We rented canoes in the White Mountains and paddled all day, setting up camp along the river in the evening. After supper, I walked into the woods alone. As I breathed the pine-fresh air, I watched my boots crunching the long, bronze pine needles in the dry, sandy soil. I smiled. I was back. Back from the dead, practically. Back in the land of the living, watching my brown hiking boots tramp among the pine tree roots.
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