Matters of life and death

Today is the day I should have let Jane die four years ago. Death that day would have been, in retrospect, better for her. It might have been better for me. But it would not have been better for our knowledge of carcinoid/NETs. It would not have been better for those who took life-lessons from her struggle. It would, arguably, not have been better  for patients.

…Death was in the room with us–and I knew it.

The weekend before had been difficult. Jane had suffered from massive diarrhea as the food she was finally able to eat passed through her almost as quickly as she could eat it. I helped change her gown and the filth laden sheets after nearly every episode–though twice I had gone down to the cafeteria for food for myself and found myself locked out while they cleaned her up.

Psychosis in the ICU

She also lost her mind for long stretches of that weekend. She asked me to eat my meals in the room because, she said, she thought the doctors and nurses were trying to kill her. She lied about her physical therapy and said her doctors had told her not to do it–that she didn’t have to. She was angry and terrified and, sometimes, a complete stranger to me. There were times I was not sure she knew who I was.

Today is the day I should have let Jane die…

One of her doctors told me she was suffering from what they called ICU psychosis–a thing that is not uncommon among patients who  are trying to shake off the lingering effects of the sedatives used during extended surgeries and begin feeling trapped in a small bed. Certainly, that was possibly part of what was going on. I know I was terrified and working hard to keep it out of my face and out of my voice.

Death enters the room

I was up with her much of Sunday night into Monday morning and she seemed to be calming down. I held her hand and talked soothingly to her until the day nurse came on at 7 a.m. I went out in the hall to tell her what the weekend had been like. She said she thought the idea of ICU psychosis might be wrong–and that I should be prepared for the possibility Jane might not make it. She saw a marked deterioration in Jane since Friday.

There were times I was not sure she knew who I was.

That this might well be the end had been in my mind all weekend. I knew diarrhea like she was having could not be sustained for long. I knew her blood pressure and respiration were fluctuating wildly. I told the nurse I would not sit in on rounds that morning–that I would stay with Jane instead. It was my habit to listen to the reports on Jane each morning and to understand the plan for the day in the week since her surgery. I felt like I was more a part of the team that way.

Staving off Death

I went back into the room. Jane was sleeping. I took her hand. She opened her eyes and looked at me, then closed them again and focussed on her breathing. I breathed with her. “Breathe with me and stay with me,” I repeated over and over in time with her breathing. I was dimly aware of the doctors, nurses and medical students talking in the hallway.

…she seemed to be calming down.

“Breathe with me and stay with me,” I chanted. The medical group moved down the hall to the next patient. “Breathe with me and stay with me.” Then her breathing caught and stuttered. I should have just continued to hold her hand. I should have said nothing and done nothing and let her slip away just after 9 a.m that Monday morning.

Death’s exit

But I didn’t. In a calm, un-panicked voice I called into the hallway. “Something isn’t right here.”

Then her breathing caught and stuttered.

Then the room was filled with doctors and nurses and they were pushing me behind a curtain so I couldn’t see what was going on. I hated that–but then the hospitalist was there asking about intubating her again. He said that would buy them a little time to figure out what was going on–and if they couldn’t fix it, they could always take it out again.

Conversing with hope

“Give it a few hours,” he said.

“A fighting chance,” I asked?

…they could always take it out again.

“A fighting chance.”

‘The moment it isn’t, you’ll tell me and we’ll end this?”

“The moment it isn’t, I promise.”

The end of the first death

We pulled her back from the edge of death. She spent 33 hours in a coma before the steady drip of octreotide brought her back to consciousness at 6 p.m. Tuesday night.

‘The moment it isn’t…’

You think about a lot of things when the person you love most is unconscious and you don’t know if they will ever wake up again–or what they’ll be like if they do. I sat by her bed. I held her hand. I talked to her. I watched the news with her. I sang to her. Somewhere in there I slept a little, I think. I know they sent me off to eat a couple of times. The memories are fuzzy.

I should have let her go

I never stopped believing she was coming back. I never stopped believing she was going to heal. I never stopped believing she would beat her cancer and all the damage it was causing. But Death was in the room with us–and I knew it. And I should have let her go with him–no matter how much it changed the future.

The memories are fuzzy.

But I didn’t. I didn’t know what I didn’t know. And the world is a different place because of that.