I didn’t know when I blogged on August 28th that my mom would live for only 32 more days.
We didn’t know that until September 30th.
In the span of those 32-days, we went from expecting her to be discharged from rehab at the end of September, to suddenly being told she had a fast-growing, aggressive cancer. Get her home and comfortable, we were advised, and admitted into hospice.
It was two weeks and one day between her cancer diagnosis and her death. The sudden flip in her story arc, and the speed with which the ending arrived, catapulted our world into a surreal state. The walls of the “real world” quickly got shut out and a single-minded focus grabbed hold.
Mom was admitted into the hospital in Vermont on Friday, September 14th, a decision that was made as a result of two days of a rapid—and unexplained—deterioration in her condition. My phone call to her that Friday was distressing and brief; she struggled to talk. I carried most of the two-minute conversation.
It was Saturday, the 15th, when I got the call about her cancer. Bubba and I had been out at the Pacific Coast, embracing a grey, foggy day at the ocean. We were driving home when my phone rang. I recognized the Vermont area code, a result of dealing with the hospital all summer while mom had various medical procedures done; I pulled over. A young resident on the other end of the line introduced himself, then explained mom’s situation.
“It’s cancer, Diffuse Large-B Cell lymphoma. We ran a CAT scan today to find out if it’s just in her hip or if it’s spread; we won’t know the results until tomorrow.” He discussed typical treatment options, chemotherapy being the most common one, and acknowledged mom wasn’t a candidate for treatment. If it was local, radiation might be an option. His words held a promise of hope; his tone sounded as if it was a promise he didn’t believe.
That night I booked a red-eye flight east that would get me to Vermont Monday morning, the 17th. I scheduled my return flight for the 29th. Given the uncertainty of things, the duration was a crap shoot. Rarely do I make decisions without as many facts as I can gather. Suddenly, facts weren’t the driving force in this decision; I knew enough. Getting home was the priority.
The next two weeks were a whirlwind of steep learning curves and a multitude of decisions; of learning what you don’t know and what you need to know; of becoming immersed in the world of medicine and hospitals, of treatment options and discharge choices, of trying to understand what hospice does and doesn’t do.
There was a lot to do; doing helped keep feelings at bay.
After arriving in Vermont, I went to the hospital to see mom. The robust, independent mother who raised me had been replaced by a frail woman, exhausted by months of medical procedures, pain and assorted medications. And now, by a cancer that was rapidly claiming what was left.
Mom was happy to see me, and gave me her big smile, but the pain medicine muddled her cognition, often resulting in conversations of incomplete thoughts. I sat with her, held her hand, fed her yogurt, got her water.
I met that morning with Milton, mom’s nurse. I had met him earlier that summer and had a deep trust in and respect for him. He spoke clearly, forthrightly and gently. He confirmed what I had heard the day before: that my dad, brother and mother had met with the doctor on Sunday. Mom had been told her cancer was incurable and terminal. She understood they could manage her pain and strive to keep her comfortable, but there were no treatments to rescue her from the cancer. She agreed she didn’t want any extreme medical measures. Her decision was consistent with things I’d heard her say while growing up.
A formal meeting was scheduled for Monday afternoon with me, dad and mom, and a team of doctors and nurses. The plan was to tell us what medical options still remained and to talk about mom’s care upon discharge. Milton was present. Mom was awake and listening, but I wondered if she could hear everything and if she understood what they were saying. Trying to understand medical-ese on the fly is tough in the best of conditions; and these weren’t the best of.
The doctors discussed mom’s cancer in detail, answered our questions, and offered some possible treatments to relieve pain. Milton spoke up, concerned that one proposed treatment would be painful and brutal for mom, with limited benefit. The head doctor agreed to have a specialist meet with us later to help us decide whether we should proceed.
I appreciated the patience and willingness of the medical personnel to answer questions and help us, but during the entire hour, I don’t recall anyone using the word “terminal” or “death.” The medical-references and conversation were complex and confusing, enough so that at the end of the hour my mom looked at the assembled group and said, “I want to live; what do I need to do to get better?”
The air got sucked out of the room; the meeting ended.
I was dazed. And distraught. What the hell had just happened? Everything I thought I knew about what mom had “accepted” about her diagnosis was suddenly uncertain. I found Milton in the hallway; turned to him for reassurance.
“No one wants to die,” he said. “When your mom said she wants to live, she wants to live without pain, and with mobility. She wants what she used to have. It’s a normal desire.”
Is it better to know you’re dying, or to hold onto hope that you aren’t?
Our afternoon meeting with the specialist led to the conclusion the pain treatment suggested earlier wouldn’t help mom. There were still a few things the hospital staff wanted to do to get mom’s pain management protocol in place, but things were moving toward mom’s discharge.
The unanswered questions as we left the hospital that day were: when would she be discharged? Where? And the unanswerable one: how long did she have?
I’ll continue to write about this experience of my mother’s death, in pieces, over time. I’m dedicating a category to stories about how my mother influenced me in life; and my experience of her death.
Photo source: Walk the Goats