Eating is one of my greatest pleasures, and it was the first thing to go. Everything I put in my mouth tasted metallic. My taste buds were distorted. The nausea wouldn’t go away with any medication, not even marijuana. I was in starvation mode.
When the cancer had returned after 23 years to finish its job, I thought the targeted hormonal therapy wouldn’t be as drastic as the chemotherapy I had the first time. But it was worse. The daily pill I was prescribed to take indefinitely — or until such time when it no longer worked — subverted my bodily functions.
My blood counts plunged to critical levels. I had to have two pints of blood monthly to bring up the hemoglobin to carry more oxygen through my body. My liver enzymes rocketed, indicating toxicity. By January this past year, I was in bed all day, getting up only to use the bathroom.
I felt like I’d lost my mojo. My spark. My life.
In March, a nurse practitioner visited my infusion room at the oncology facility where I was receiving intravenous rehydration and asked if I would consider transitioning to hospice. I had no clear picture of what hospice was, except that it’s where you go when you are about to die. But I trusted my medical team's judgment.
I said, “Yes.”
I went into hospice. And to my surprise, that's how I got my mojo back.
I was taken off all cancer drugs and cared for at home by the hospice medical team. They also supported my daughter, Elizabeth, and taught her how to care for me.
Elizabeth came by with newborn baby Lily, every day, and took care of my personal needs. Then we would go out for a lunch or at teatime, or take a drive to nearby towns. The short wobbly walks to the car while holding on to her arm soon became more steady, and I could walk further as my muscles became reconditioned. I began to pick at my food rather than reject it outright. A month later, I no longer needed the electric cart in Target, or for Ben, my son-in-law, to lift me into the car seat or out of the dining chair.
About six weeks after stopping the drugs, I woke up and I wanted an egg salad on sourdough bread and iced oat milk latte. For lunch, I wondered if we should do the dim sum carts at Joyful Garden. Or rasam and thosai at Dosa n Curry. We should definitely stop at Sofra on the way back for lemonade and tahini shortbread. The nausea and aversion for food was gone. I was delighted to be eating again and entered into it with abandon, especially in the company of family and good friends.
With all the lunches I was booking with friends whom I’d not seen for months, I called Laura, my hairdresser, for an appointment. My hair had grown unruly now that the drug wasn’t curtailing its growth.
“You remember, right? Not too short and lots of texture,” I told Laura. When I got home, I dug deep in the closet for summer dresses and shoes. I had places to go!
I took baby steps towards traveling, another love of mine. Over a month, Elizabeth, Lily, and I took overnight trips to Newport, Rhode Island, Portsmouth, New Hampshire, and Portland, Maine, hoping to veer towards the airport after that and venture on to Chicago and New Orleans.
I started writing again. I'd scoured the internet but couldn't find anything on first-person accounts about dying and hospice (always written by caregivers), so I wanted to write about that. And here I am.
My life is not perfect. I don't walk nine miles a day as I did pre-cancer. I limp badly, and it’s a good day if I can make a quarter mile. I'm in bed for days after an overnight getaway. I don't feel like seeing anyone some days. But I have the support of the beloved hospice team who comes to my home to help with my disabilities and take care of infections and pain, enabling me to live the life I want for as long as I can.
The window will close at some point, and I will go into decline as the cancer takes over. But I'm grateful for this interregnum. Hospice care has given me back my life, for now. I don't know when the window will close -- none of us do, really -- but I'm cherishing every moment while it lasts.