Eating is one of my greatest pleasures, and it was the first thing I would go for. Everything I put in my mouth tastes metallic. My taste buds were distorted. Nausea will not go away with any medication, not even marijuana. I was in hungry mode.
When the cancer came back after 23 years to quit its job, I thought targeted hormone therapy wouldn’t be as drastic as the chemotherapy I received the first time around. But it was worse. The daily pill I was prescribed to take indefinitely – or until the time it no longer works – undermined my bodily functions.
My blood count has dropped to critical levels. I had to get 2 scoops of blood a month to get the hemoglobin to move more oxygen through my body. Liver enzymes increased, indicating toxicity. By January of last year, I was in bed all day, and woke up to use the bathroom only.
I felt like I lost my mojo. Sparky. my life.
In March, a nurse practitioner visited the injection room at the oncology facility where I was receiving intravenous rehydration and asked if I would consider moving to hospice care. I didn’t have a clear picture of what a hospice was like, except that it’s where you go when you’re about to die. But I trust the judgment of my medical team.
I said yes.”
I went to the nursing home. And to my surprise, this is how I got my mojo back.
My home aged care team has taken me off all my cancer medications. They also supported my daughter Elizabeth and taught her how to take care of me.
Elizabeth came with her newborn Lily, every day, and attended to my personal needs. Then we go out for lunch or for tea time, or we go by car to the neighboring cities. The short oscillating walk to the car while holding her arm quickly became more stable, and I could walk farther as my muscles regenerated. I started eating my food instead of rejecting it completely. A month later, I no longer needed an electric cart at Target, or for Ben, my brother-in-law, to get me into the car seat or out of the dining chair.
About six weeks after stopping drugs, I woke up and wanted egg salad on sourdough bread and chilled oat milk. For lunch, I wondered if we should do dim sum at Joyful Garden. or Painter and Thousae at Dosa n Curry. A must stop on the way back for lemonade and tahini. Nausea and aversion to food are gone. I was glad to eat again and got into it with disdain, especially in the company of good family and friends.
With all the lunches I’ve been booking with friends I haven’t seen in months, I called Laura, my hairstylist, to set an appointment. My hair has grown wildly now because the medication didn’t limit its growth.
“You remember, right? I told Laura. When I got home, I searched deep in the closet for summer dresses and shoes. I had places to go!”
I’ve taken small steps towards travel, which is another love of mine. Over the course of over a month, Elizabeth, Lily, and I took overnight trips to Newport, Rhode Island, Portsmouth, New Hampshire, and Portland, Maine, hoping to head to the airport afterwards and venture to Chicago and New Orleans.
I started writing again. I searched the internet but couldn’t find anything in first person accounts about dying and coping (always written by caregivers), so I wanted to write about it. And here I am.
My life is not perfect. I don’t walk nine miles a day like I did in my pre-cancerous stage. Extremely lame, which is a good day if you can go the quarter mile. I’m in bed for several days after a full night’s rest. I don’t feel like seeing anyone some days. But I have the support of a beloved aged care team who comes to my house to help with my disabilities and take care of my infections and pain, enabling me to live the life I want for as long as possible.
The window will close at some point, and I’ll go downhill as Cancer takes over. But I am grateful for this period. Hospice care has made my life back for now. I don’t know when the window will close – none of us do, really – but I cherish every moment so it lasts.
Editors’ note: This is the third of three articles Grace has written (so far) about her final cancer diagnosis. Read her first article here; second here.
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