After my diagnosis, I didn't know what to tell my granddaughter, Ella. She was only five when I learned about the cancer. When she came over for a visit after my first chemo treatment, I told her I needed to lie down for a while.
Amah is sick, we would say, but that was a euphemism.
I wanted to tell her the truth. That our time together was short. But what would I say?I also worried about the after part. Would we still watch the Octonauts? Give kiss attacks? Share knock, knock jokes? Snuggle and read together in bed.
The targeted hormone therapy my doctor prescribed made me terribly sick. It sent me to bed for months. I was nauseous, exhausted, lifeless.
Eating had always been one of my greatest pleasures. But that was the first thing to go. Everything I put in my mouth tasted metallic. Buttered toast resembled sawdust. Routine things — getting dressed, taking a shower, putting on my shoes — became punishing activities.
I stopped listening to music, reading, watching movies, attending Zoom Bible class, reaching out to people, writing. I had lost purpose and interest in life.
I thought, some people have it easy, like my husband, Raja. Twelve years ago, he was waiting to be discharged from the hospital after open heart surgery when he collapsed and died. Lucky guy.
My death is a more drawn out affair.
We have had our issues as mothers and daughters do ... But hospice has helped redeem the years that the locusts had eaten.
About a year after my diagnosis, a nurse asked me if I'd consider transitioning to hospice care. I didn't have a 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. Hospice gave a name to my condition. That was good because it made it much easier to talk about dying and death. It also gave my family and friends the license to call it by name. Finally, we can all be honest with each other and talk about our feelings for one another as we plan for the end of my life and beyond.
About six weeks after stopping treatment, my nausea and aversion to food was gone. I woke up one morning wanting an egg salad on sourdough bread and an iced oat milk latte for breakfast. For lunch I wondered if we should do the dim sum carts at Joyful Garden. My taste for lemonade and tahini shortbread at Sofra was back to.
I can't walk nine miles a day as I did pre-cancer. It's a good day if I can make it a quarter mile. I don't always want to see people and I tire easily, but I have the support of my beloved hospice team and it enables me to live the life I want for as long as I can.
When I first entered hospice, Elizabeth, my daughter (I call her Bessie) had just given birth to my second granddaughter, Lily. In her postpartum fog, Bessie got involved with the home hospice care team. She would get me out of bed, dressed and out to lunch or tea. Then we would rest in bed after lunch, with baby Lily, latch firmly to her breast lying between us.
The afternoons sailed along, filled with chatter or comfortable silence. We also cooked together, whenever I had the energy. We'd gather around the kitchen island, her computer resting on one arm for taking notes, Lily in the Baby Bjorn.
Every so often Bessie would ask me to do something like give her a list of people I want her to contact when I die, or the songs and order of service at my funeral. Some of those things I haven't thought about yet. I'm still getting used to the idea of dying.
We have had our issues as mothers and daughters do. The pace of life, ambitions and selfish desires had drawn us apart. But hospice has helped redeem the years that the locusts had eaten.
We got to do what we wanted with the time I have left. Spend it with each other meaningfully.
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 am cherishing every moment while it lasts.
I'm at peace and ready to slip away, knowing I have loved and am loved.