On my father’s death.

The official story of my father’s death is that he died of prostate cancer on October 26, 2015.  He lived for over 15 years with prostate cancer.  He was 68 years old.

That is the official story.

The non-official story is one I have not shared and haunts me. It’s a story I hate.

Prostate cancer didn’t kill my father; at least, not in the traditional sense.  The real truth is no one can say for sure what killed my father.  It is an uncertainty that haunts me every day.

The facts, some learned after his death, was that he was much sicker than he led any of us to believe.  We learned a few weeks after his death that, at one of his last visits to his cancer doctor, he was spoken to about hospice.  Understand, my father didn’t seem that ill to me.  At least, no more ill than he typically was.  Yes, he was more frail.  The toll of 60+ chemotherapy treatments had left him tired and in pain.  But he still drove places.  He still ate.  He was still HIM.

I learned later that he had recently become incontinent at night; something my mother hadn’t wanted to share and certainly my father didn’t either.  He was also occasionally bowel incontinent.  He refused to wear any nighttime protection until four days before he died.

Yes, he was getting weaker and wouldn’t stay up as late as he used to.  I knew that the cancer had spread and metastasized in his bones.  He had recently had scans and he saw that there were pockets of cancer in his skull.

I knew he smoked his whole life but I didn’t know he had confirmed emphysema until after he died, and that he was worried about lung cancer.

I didn’t know that the doctors had told him at least a month prior to his death that he should stop treatments and that he would not.

But he was still him.  I talked to him often (when I could stand it, which wasn’t as often as I wish it had been) and he was him.  He was not actively dying.

He was supposed to die in a hospital bed, settled in the family room of my parent’s home.  There was supposed to be a decline and then a lingering where I would be calling my mom daily asking how my dad was.  Hospice would come to the house and we would stand around his bed as he eased in and out of consciousness, holding his hand, telling him we loved him.  And then I would get a phone call that told me he was gone.

I was supposed to be able to say goodbye.

My father died on a Monday morning.  The Wednesday evening before he died, he went o the hospital.  My husband was getting ready for a business trip that would take him from home for two weeks.  “Should I stay?” he asked me.  “No,” my mother and I assured him.  “This is just a reaction to medication.”

A few days before that Wednesday, my father had received an infusion of a drug called Jevtana.  It is a drug designed for late-stage prostate cancer.  It was not actually a drug that his doctor appeared to wholeheartedly recommend, but he wanted it.  He wanted to live, and the drug was designed to extend life.  He wanted life; as much of it as he could have.

On the Tuesday before that Wednesday, he went back to the doctor to get an injection of Neulasta, a drug designed to reduce infections.

Then Wednesday came.  My father was vomiting liquid that was the color of coffee grounds and was so weak, he agreed to go to the local hospital.  I came to see him on that Wednesday evening.  He looked terrible.  Pale, with a tube in his nose, not entirely conscious.  I was furious.  This was clearly a reaction to Jevtana and he needed to be seen by HIS cancer doctors, not the local hospital.  I begged him to let me find a way to have him transferred.  He refused.  I couldn’t do anything but sneak him some water he was asking for and was against doctor’s orders.

“Nothing by mouth,” my mom said to me, seated in the corner.

“I don’t fucking care,” I snarled back at her, giving my dad the water he was craving.

Thursday.  Friday, my  husband left for his trip.  Saturday.  My father was improving, he was going to be released home.  He was begging to go home.  He was become so nasty, my mother had cut her visit short with him.  He refused to hear anything, he refused to get transferred to his cancer hospital – he wanted to go home.  PERIOD.  He was treating staff so terribly, my mother was apologizing.

Maybe it’s because he’s a smoker and hasn’t had a cigarette in days, I hypothesized.

And then Sunday, October 25, he was released to home.  I spoke to him for a short time that evening.  He had left the hospital that morning and was resting.  It wasn’t entirely clear what had happened to him – something about  his stomach?  – but he said he felt a little better.  “Just tired,” he told me.  “Just so tired.”

I didn’t talk to him long.  He ended up calling my sister and talking to her far longer.

Monday, October 26th.

The phone is ringing.  It is 915 AM.  I am exhausted from my husband’s travels; it is my first morning to get all of the kids off by myself.  I hadn’t had a good night’s sleep.  I recline in my chair and pull a blanket over me.  But the phone is ringing….omfg.

I check the caller ID. It’s my parent’s house.

At 915? I think.  It’s my father.  He’s a morning person and he’s calling to bug me.  He always does this.  I’m not in the mood.  I’ll call him back.

15 minutes later, the phone rings again.  But it’s my husband.

He’s overseas! I think.  He never calls home.  What time is it there, dinnertime?

I pick up the phone, almost excited to hear from him.  But his voice is so serious.

“Your father passed away,” he says, after he asks if I am sitting down.

I cannot process what my ears have heard. I begin to scream. I am forcing the screams out of my body.  I feel as though I must scream, because screaming is what people do when they hear this.  But I must force them.  I scream out.  No.  NO.  NO!!!!!! No! I just talked to him!  No, what are you talking about? NO! NO! NO!

I am shaking.  My ears feel deceptive.  He just got out of the hospital…

“Wait! He called me this morning! I saw the number!”

“That was your mother.  She was calling to tell you and then you didn’t answer, so she called me.”

I now realize I am shaking. I can barely hold the phone in my head.  My wrist is rising and falling with the intensity of my shakes.

And my husband tells me what happened.

My mother found him on the floor of the family room, where he had been sleeping that night.  She found him around 9 AM that morning, face down on the carpet, a small pool of coffee-ground colored fluid by his mouth.  He was cold and stiff.  He had died many hours prior.

My mother told me she had last seen him around 245 AM that morning.  He was resting in the recliner.  She made sure he was asleep, because he was so tired.  He seemed comfortable.  She had woken him briefly to ask if he wanted to go upstairs to bed but he had said no.  She finally went up to bed around 3 AM and returned at 9 to find him.

He was on the floor, face down.  Had he tried to get up? Get help? Called out?  If he had died of a heart attack in that recliner, wouldn’t he just have been stiff and cold, recumbent in the chair?  But he was face down; the recliner was put down, his knees close to his chest, his face lightly bruised, either from the fall or from the pooling of blood to his face.  Did he know something was happening to him?  WHAT had happened to him?  A heart attack?  Stroke?  Some other catastrophic event?  Was he getting up to use the bathroom and he just fell to his knees?  Was he in pain?  Suffering?

For the rest of my life, I will remain haunted by those questions.  I will never know, and not knowing drives me batshit crazy.

Prostate cancer didn’t exactly kill my father, but this is what I tell everyone.  Because the truth is far more upsetting, and complicated than that.