Before the first crisis

I was sitting just to the left of Jane’s hospital bed six years ago today. She’d arrived in the cardiac ICU just about midnight and they’d let me in to see her, briefly, about 1 a.m. I’d talked to her doctor about the surgery. He’d seemed pleased, despite the complications they’d encountered, with how things went. There’d been no sense of crisis.

…she kept paying it forward.

They’d warned me what I would see when I entered the room for the first time. Sometimes the pasty complexion and all the tubes and wires cause people to faint when they first encounter it. I spent half an hour there, just holding her hand and whispering sweet nothings. Then they sent me back to my hotel.

Jane wakes up

I slept a few hours but arrived at her bedside a little before eight the next morning. The nurse stood behind his panel of dials and meters, monitoring every vital sign, every drug going in and every fluid going out. I liked him. There was a calm about him I wanted to emulate. I saw that same calm in all her nurses over the next few weeks, even when things collapsed into chaos and crisis. That happened four times before death claimed her.

They’d warned me what I would see…

Now, I held her hand and talked to her. The nurse told me she was unlikely to wake up before noon, but her eyes flickered open within an hour of my arrival. They didn’t stay open long, maybe five minutes, and she dozed off again. But within an hour she was fully awake and alert.

We had a plan

She couldn’t talk with the tube going down her throat to aid her breathing. She couldn’t write with all the tubes and wires she was wrapped in. But we could hold hands and I could tell her what the surgeon had told me. It very much looked like she’d be in the step-down unit by Thursday night–as planned–and I’d be back home and out of the nurses’ and doctors’ way as she began to rehab her heart.

There was a calm about him…

It didn’t happen that way, but we had 30 hours that certainly looked like clear sailing into a difficult but workable future. Yes, her liver was a mess. Yes, her intestines were likely lined with tumors. But we had a plan–and the first part of that plan was going well. Tomorrow, we’d celebrate her birthday as best we could when she couldn’t eat, confident there would be more in the future when she could.

When right turns wrong

By the following day, everything was ready for the move upstairs except locating a bed for her on that ward. No problem: we started taking out the lines and doing the physical therapy as though the move had already happened. And Jane was a more than enthusiastic participant. She kept doing the simple exercises long after the PT people left. They’d told her she could–that it would speed up the process. And Jane wanted to be home by Christmas.

…we had a plan…

And then it all went sideways. At the shift change the new nurse ran the checks every new nurse makes when taking over a patient’s care. They’d taken off the pulse-oxygen monitor in preparing to move Jane to the step-down unit. The exam showed Jane’s blood oxygen levels crashing. They put her back on oxygen but the levels stayed lower than was good. They ran tests, did scans–but could not figure out what was going on.

Carcinoid crisis

I spent that night sitting with her in her room in the ICU. I didn’t sleep–and neither did she. She was in the midst of her first carcinoid crisis, though we didn’t realize it at the time. It was minor, compared to the ones that came later. Those would put her in a coma–and the last one would kill her.

…Jane wanted to be home by Christmas.

Jane never got to the step-down unit. I didn’t sleep at home again until December 10, several hours after her death. I curled up in a fetal ball in my corner of the bed and cried myself to sleep. Then I put on a brave face and went to work planning her funeral.

What we learned

We learned a lot from Jane’s struggles over those four weeks. Doctors rewrote the protocols for heart surgery aftercare on patients with carcinoid syndrome from what Jane went through. People are alive today who might not be because of that. I’m glad about that–a small brightness in an otherwise dark firmament.

Jane never got to the step-down unit.

Jane wanted good things to come from her fight with NET cancer. She wanted her doctors to learn all that they could from her. And she wanted future patients to benefit from her battle with the demon. Even dying, she kept paying it forward.