Some people have it easy. Like my husband, Raja. We always said we wanted a swift death: a heart attack while when we were young, before the decay and disease set in. That was how he died 11 years ago, at 55, after open heart surgery to change his faulty bicuspid aortic valve. He was waiting to be discharged when he collapsed and died. Lucky guy.
My death, however, is going to be a drawn-out affair.
Fourteen months ago, the breast cancer came back after 23 years, with metastasis (mets) to my hip bone and aortic lymph node. For almost a year, my life was crushed by the side effects of the targeted hormonal therapy — drugs directed at proteins on breast cancer cells to stop their growth. They were too toxic for me, spiking enzymes and tanking blood counts to dangerous levels. I had severe anemia, extreme fatigue and was unable to eat or drink.
As the toxicity in my body increased, I took to my bed. For the first three months of this year, that’s where you’d find me: nauseous, exhausted and lifeless. I only got up to use the bathroom or to have a piece of buttered toast that tasted like sawdust. I love to eat and grieved my inability to do so. My weight dropped several pounds every time I stepped on the scale in the doctor’s office; my clothes hung loosely. I could only manage sips of fluid and became severely dehydrated, exacerbating the vicious cycle of fatigue.
Routine activities that I had taken for granted, like dressing and undressing, taking a shower, putting on my shoes, became punishing activities — and took forever to get right – because my muscles had become deconditioned and lost their strength. I had to carry one leg at a time into the car or onto the bed. The decline was so swift my mind and body couldn’t keep up.
The decline was so swift my mind and body couldn’t keep up.
When the body is not well, the mind and spirit aren’t either. They all go into a state of minimal activity and depression. Even my favorite playlist of Yo-Yo Ma playing Ennio Morricone didn’t stir my spirit. Over time, I stopped listening to music, reading, watching movies, attending Zoom bible class and Sunday services, reaching out to people, writing, and dreaming of travel destinations. I had lost purpose and interest in life.
I was alive, but I was not living.
In March, when I was at the hospital for an urgent intravenous hydration, the nurse practitioner came by (the doctor had a full schedule). She asked me: “Would you consider transitioning to hospice care?”
I was stumped. Where was this coming from? I’d expect that sort of question from my doctor during a consultation, but not when I was being hydrated in the infusion room.
“The treatment isn’t working,” she continued. “Your body is responding violently to the drugs, and the symptoms are likely due to disease progression as well. Furthermore, there’s not a whole lot of treatment options for your particular situation.”
I felt blindsided. By definition, hospice care is for people with a life expectancy of six months or less, if the illness runs its normal course. But my medical team hadn’t spoken to me about reaching the end-of-life stage any time soon. I had been soldiering on, until the drugs I’d been taking stopped working, and we moved on to the next line of drugs. Or when my doctor thought it was time to stop treatment. I guess this is that time — and she’s telling me now.
Stopping treatment and moving to hospice care wasn’t a difficult decision to embrace. I made it on the spot. “I’m sick of being sick all the time. So yes, take me off all the cancer meds and I agree to have my medical team take care of me at home,” I told the nurse practitioner “God-willing, the toxicity of the drugs will wear off and I can get back to the business of living. For a limited time at least. Until the cancer takes over.”
That day, after the nurse practitioner gave me her honest assessment, I found my way home in a daze. Confused at the suddenness of the change in treatment and the reality of my situation.
My body is shutting down and I’m slipping away. This is what dying looks like.
It slowly dawned on me that the physical symptoms I’d been experiencing expressions of metabolic decline. My body is shutting down and I’m slipping away. This is what dying looks like.
There is some sense of relief that the suffering will soon be over, and comfort that I’ll be home with the Lord. But there’s also a real sense of wistfulness of leaving my people and doing the things that I love.
Raja was always a big fan of JRR Tolkien’s work, reading it often since he was a teen. My daughter, Elizabeth, and I became great fans when the movies came out. The closing song of “The Hobbit” resonated with my journey:
Night is now falling/So ends this day/The road is now calling/And I must away/Over hill and under tree/Through lands where never light has shone/I turn at last to paths that lead home
My cancer, without treatment, is now in free fall. I cannot tell where hospice will take me. No one’s ever explained what it’s like to die. But this I can say: Raja ol’ chap, I’m not too far behind. Keep the light on for me.
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