My father died today.
He was 70, and despite two brushes with cancer in the past 15 years (first prostate then lung), he had been healthy and vital right up until two months ago when some vague neurological symptoms led to a devastating diagnosis: leptomeningeal carcinomatosis, a spread of lung cancer cells to the membranes (meninges) surrounding brain and spinal cord (the illness Valerie Harper was recently diagnosed with). Rarely diagnosed, it is almost always terminal within two to three months.
In my dad's case, we thought that if anyone could beat it, he could.
Dad had no evidence of disease since his initial diagnosis in 2005. That initial diagnosis was grave: the lung cancer had spread to all of the lymph nodes they tested in his torso. Nevertheless, the cancer quickly relented once he began taking Tarceva, a drug that had then been newly approved by the FDA. With little history behind it, it was not then known how long a patient needed to take Tarceva in order to continue to benefit. This past year, a medical decision was made to gradually wean him off of it. When cancer in his brain was discovered, it was hoped that a combination of surgery, whole brain radiation and Tarceva might cause the cancer to relent once again.
The surgery seemed successful, but as I discuss here, it was clear that the cancer was continuing to spread. We had faith in the Tarceva, and my dad got through about two weeks of it. There were moments of hope, as when his appetite seemed to return or when he suddenly seemed remarkably lucid.
On Friday, I brought my teenage sons to visit him at home. He was tired, but he said he was happy to see his grandsons. Just before we left at the end of the day, Dad squeezed my hand to demonstrate how strong he still remained. As my kids and I drove home, we all agreed that that cancer treatment is brutal (we know this from my own experience with it) and that despite that Grandpa Jeff couldn't get out of bed, he might still be on the road to recovery.
Two hours later, we arrived home. Within minutes of my arrival home, my mom was calling me. "You need to come back right away; I've called for hospice care." (Hospice provides medical services, emotional support, and spiritual resources for people in the last stages of a serious illness; it means that treatment is over, only palliative care remains.)
I was shocked and indignant. Just hours earlier, he had seemed fine (relatively speaking). He was happy to see my kids. He squeezed my hand! I was still hopeful! How could my mother have made the decision to stop his treatment? How, on a Friday night, without seeing a doctor? None of this seemed possible. None of this seemed to be in good faith.
The hospice nurse, who had arrived quickly and administered a combination of painkillers and tranquilizers that immediately relieved my dad's pain, intervened on my mother's behalf. "Your father's body is shutting down," she told me in a soothing voice. I protested, of course. Calmly, she explained that my dad now bore all of the signs of death encroaching. As I listened, my mind reeled, trying to find ways to poke holes in what she was saying. But there were no holes and nothing to poke them with. Something had changed since I had gotten into my car and driven home. Something had shifted, and now this nurse, who had attended hundreds of dying patients before my dad, was predicting that within 36 hours, my dad would be gone.
With my dad resting comfortably, my mom reversed herself yet again and told me not to come that night. Now I was furious. I felt like I was being toyed with. But my mom promised me that she would call me the instant that it seemed that anything was changing (based on the nurse's criteria).
When I woke up the next morning, my brain was muddled -- shock and denial were battling rage and fury. Acceptance was nowhere to be found. Bargaining entered the equation: Should I make the two-hour drive that day? Could it wait until tomorrow? Was this even really happening -- or should I pack a suitcase and plan on staying a week? A month? What about my kids? Don't they need their mother? My dad had not been awake since the hospice nurse administered his pain meds, and it was now 18 hours later. Would he ever wake up again? Would my going there do anything? Would my going there mean anything to my dad?
Endless loops of shock, denial, rage, fury, bargaining. And not a shred of acceptance, not an iota.
I asked my mother what the purpose of my coming was when I had already come to terms with my father's death and even believed that I had said goodbye when I had left the day before. My mother told me she wanted me to have no regrets, but I couldn't process it. What regrets? What regrets? Even as I was calling my mom every hour for updates, I could not possibly understand what regrets I might have, what good it might do, what the point was of saying goodbye to someone who wasn't even conscious.
And then just as suddenly as my dad's condition had changed the day before -- and just as inexplicably -- something shifted in me. I didn't even call my mom. I just drove. Two hours later, I arrived at my parents' house. A nurse answered the door. My dad was asleep in a hospital bed, my mom was lying asleep in the queen-sized bed beside him. I woke her up when I got into the bed beside her. She got up and went to sleep in another room, and I inched over and reached for my dad's hand.
I slept fitfully until morning and woke up when my sister arrived. Soon after, they began changing my dad's shirt and moving him so that he wouldn't develop bedsores. His breathing was still steady, his color still seemed good. In fact, he looked handsome in the black cotton sweater my mother had chosen for him. I closed my eyes for a nap and was woken up not long after.
It was time to say goodbye, my mother told me.
How did she know this?
The hospice nurse had told her the signs -- the fingers and toes that were cool to the touch. The breathing coming less frequently. The thready pulse. The faint heartbeat. A gurgling in the chest, which was remediable with a special medication, but which was undeniable as a sign of what was coming.
The nurse left the room, and my mother, my sister and I lay next to him and talked to him about his life and about his legacy, and about everything we would remember about him. I told him how I was so amazed that he became my dad at age 22 -- just a kid -- and that it made sense now that he used to call himself "The Kid" and turn cartwheels. I told him how he had inspired me to never stop turning cartwheels and to always be a "kid." I told him how happy my kids were to see him and how much he means to them. My mom thanked him for marrying her even though they were so young, and for being her support and the love of her life for 48 years. My sister shared her own memories and told him how much she loves him.
All the while, his breaths were coming less frequently. All the while, his pulse became more thready, his fingers grew colder, and his mouth had fallen open (another sign). At some point, while we were huddled close to him and telling him how much we loved him and that he could stop fighting and let go, my father left his body.
His passing was so peaceful, none of us can say exactly when it even happened.
As his wife and two daughters chattered away -- peace restored after months of dysfunctional family dynamics -- my father took his leave, leaving the living together in peace.
I am going to miss my dad more than I ever was willing to allow myself to imagine while he was dying. I can't say that my father was ready for death or that any of us was ready for him to go. But I believe that thanks to hospice care, and some miracle of timing and life force and will that I will never quite understand, my dad's death was as beautiful as a death can be. Even as I begin the process of grieving his loss, I am grateful for that, more grateful than I ever could have imagined, more grateful than I could have ever known was possible in the wake of such loss.
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