Jane’s birthday present

Jane and I were celebrating her 56th birthday in her room in the ICU at Brigham & Women’s Hospital in Boston four years ago today. She was recovering from the heart surgery done two days earlier to replace the valves in the right side of her heart. She joked with the doctors and nurses that she’d gotten a new heart for her birthday–and that while she couldn’t have ice cream and cake today, she was looking forward to it when she could finally eat again.

The fight goes on–and we will find a way to win.

I had come in from the hotel I was staying at early that morning. There was a joy in my step. Jane’s recovery was a little behind where it would be for a normal heart patient, but right on schedule for one whose heart problems were caused by carcinoid/NETs. Our original plan had been for me to go home Wednesday night after they moved her to the step-down unit for rehab, but the decision about was coming later than we had hoped. I’d arranged to stay on at the hotel through Friday morning.

Preparing for the move

After rounds, they decided they would move Jane to the step-down unit late that day or early Thursday. It was simply a matter of waiting for a bed to open up. They would finish weaning Jane off of oxygen and the drugs they were pumping into her over the course of the day to get her ready for the transfer. The physical therapy people arrived in the afternoon and worked with her as they had the day before. Jane had been following their directives faithfully–almost obsessively–ever since they left Tuesday afternoon.

…she’d gotten a new heart for her birthday…

Dr. Couper, her surgeon, came in and said her heart was healing normally. Jen Chan, her oncologist came in to check on how Jane was doing. Her cardiologist, Javid Moslehi, came by as well. Everything seemed to be moving in the right direction, so much so that they started turning the monitors off about 2 p.m.

Our birthday nightmare

The night nurse came on at about 7 p.m. She ran through her checks and asked for a pulse-ox measurement. From that moment on what had been a happy birthday filled with hope went sideways. Jane’s pulse-ox was down in the 88-90 percent range. Everything else looked fine, but that pulse-ox was way below where it should be in a healthy human being. We didn’t know it then, but Jane was in the midst of the first of the four carcinoid crises that would ultimately kill her.

Everything seemed to be moving in the right direction…

Jane’s tumors were producing serotonin. Serotonin controls lots of different things, including respiration and blood pressure. Drop those very far outside the human norms and you simply won’t have enough oxygen in your blood stream to keep your body happy.

Sleepless in the ICU

I stayed with Jane all night, save for a road trip she made to another building in the hospital where they still had a scanner manned. I’ve rarely been more frightened in my life–but I pushed the fear away. I knew I had to stay sharp and–as her nurse said to me–there was no need to panic unless the nurse panicked–and she wasn’t going to.

…a happy birthday filled with hope went sideways.

It was a sleepless night for both Jane and me. Sometime the next morning, they got things under control again–but all thought of a transfer to the step-down unit was gone. I went back to the hotel and slept for a few hours that night. It was a fitful sleep. It was the last night I wasn’t in the room with her–and the last time I would leave her other than when the nurses threw me out to get something to eat or to spend time away from the hospital for an afternoon.

The carcinoid riddle

The riddle of her recurring carcinoid attacks has never been scientifically resolved, as far as I know. I suggested the day before Jane died that it seemed like every time she started physical therapy again, an attack followed within 24 hours or so. I’m convinced that isn’t a coincidence–that when the body started calling up the hormones needed to rebuild her muscles, the tumors got the same message and started kicking out large quantities of serotonin that suppressed her respiration and blood pressure.

I stayed with Jane all night…

Her doctors told me at the time I might be right. And I know the protocols for carcinoid heart surgery patients have changed somewhat based, in part, on what they learned from Jane’s experience. At least that’s what they have told me–and that other patients have benefited from that knowledge.

A fighting chance

I take consolation from that. Jane and I both knew we were sailing into terra incognita. We both knew there was no other chance of changing no hope into a fighting chance for us–or for anyone else. We weren’t bargaining with gods or anyone else. We were just doing what we had spent our lives doing: fighting against long odds for the greater good.

…other patients have benefited from that knowledge.

Happy birthday, my darling. The fight goes on–and we will find a way to win.