Jane’s birthday present

“I got a new heart for my birthday.” Jane said that cheerfully seven years ago today. She had gotten out of bed, briefly, for a short walk down the hall. She’d begun doing other pieces of physical therapy. We were preparing to move her to the step-down unit as soon as they had a bed for her. They’d taken off the monitors as part of that preparation. It was truly a happy birthday for both of us.

…especially on her birthday.

Then the shift changed and the new nurse started doing her review of Jane’s condition. Jane’s blood-oxygen level had dropped into the upper 80s. Jane went back on oxygen, but the numbers refused to budge. Then they fell into the low 80s. They took Jane to another building for a scan in the wee hours of the next morning. I never got back to my hotel room that night.

Birthday night drama

None of us realized until weeks later this may have been the first of the carcinoid crises that would eventually kill her. We thought the problem came from a lung that hadn’t fully re-inflated after the surgery. Jane would spend many hours strapped into a CPAP mask over the next couple of days. She hated the mask. She was claustrophobic to begin with. Life in that mask was a hateful struggle.

I got a new heart for my birthday.

This was not the first complication in the replacement of the valves in the right side of Jane’s heart. Two days before a 4-6 hour operation had turned into 10 hours. First, they’d had difficulty placing the central line because Jane was so dehydrated her veins just didn’t take well to the needles. Then, in mid-operation, they’d discovered the damage to her heart was much more extensive than anyone had imagined. The surgeon had to build a new seat for one of the valves.

Two days before Jane’s birthday

I’d sat in the heart surgery waiting area as doctor after doctor came in to speak to other patients’ loved ones. At one point, I went for a walk down Tremont Street to Mission Hill Church. Senator Ted Kennedy had made a similar trek every day when his son was in the hospital fighting his cancer. Kennedy’s own funeral was held there years later–and Jane and I had watched it on television.

Life in that mask was a hateful struggle.

In college, I’d lived in that neighborhood. I’d watched the sun rise from a small park next two the church on many mornings. That afternoon, I sat in that same space for a time. Then I went inside and sat in a pew at the back of the church. Someone walked the Stations of the Cross as I sat there. I’m not Catholic–not even traditionally Christian. But the arches and the stained glass and the silence eased me marginally.

Into darkness

I walked back to the hospital, hoping for some news. There was none to speak of–just that the surgery continued. The people at the desk were supportive. They’d seen this all before–knew and understood my anxiety. Slowly, the room emptied out until I was the only person besides the person on the desk still there. At 8 p.m., they closed that area. I went to the lobby outside the ICU and let the nurses know I was there. Periodically, they gave me what bits of news they had.

In college, I’d lived in that neighborhood.

I tried to watch some television. It was just noise. Most of the time I stood at the window, looking out over the area I had once called home–and pacing back and forth, trying to burn off the nervous energy. I did that a lot in the weeks that followed when I couldn’t be with Jane for one reason or another.

Home by Christmas

Eventually, they told me Jane was in a recovery room and would be upstairs in a couple of hours. I called her father and sister to let them know, then settled in to wait for the surgeon. The surgeon came up about 11:30. He told me about the damage to her heart, the problems with her dehydration. But the surgery had gone well, despite that. He expected her recovery would go as planned–slow, but ultimately, she’d be home by Christmas.

I walked back to the hospital…

They let me see her about an hour later. They try to prepare you for what you will see. People sometimes pass out when they see someone like that. The paleness alone is difficult. There are lines and wires everywhere and you can’t touch the person you most love in all the world despite knowing how much you need to hug them–to let them know you are physically there and not just a disembodied voice in their dreams.

Back to the present

Wednesday, I had meetings with people at Dana-Farber, Jane’s oncologist, Jen Chan, among them. I had a meeting with people from the Jimmy Fund Walk in the morning. Then I went into Kenmore Square for lunch. I walked back to DFCI afterward for my meeting with the 3-in-3 committee. I was early, so I walked out to Mission Hill Church. They were in the middle of a service, so I didn’t go in.

…she’d be home by Christmas.

I walked back, going down the long main corridor at Brigham and Women’s Hospital, as I had during every day of Jane’s time there. It dawned on me only then I was retracing my steps on that day seven years before. My conscious mind was focused on meetings and the work in front of me. My subconscious was busy reliving the events that started me on this path.

Birthday memories

After the afternoon meeting, I walked back to the heart clinic building. I took the elevator to the sixth floor ICU. I stood, once again, in front of those windows. I looked out at the lights on Mission Hill. And I remembered the young man who once lived there. I remembered the older man waiting for news about his wife. I saw the face of the person I’ve become–and saw the work that remains for me to do.

…I walked out to Mission Hill Church.

Jane could have died that day seven years ago. She could have died from that first crisis the night of her birthday. I could have let her die when the second crisis took her down the following Monday. Sometimes, I think I should have. Sometimes, I think she would have liked any of those options better. The thought still haunts my sleep.

Contemplating different paths

I would be different today. I might be doing other things. Perhaps I would sleep better. Perhaps not. The events that followed shaped more than my life, though. They helped shape the lives of others as well–doctors, nurses, caregivers, patients. New knowledge emerged from those events–new alliances, new friendships, new ideas, new focuses, new procedures, as well.

The thought still haunts my sleep.

Jane’s death and the manner of it made a difference in the lives of others, just as her life had. But I miss her–and the loss still hurts–especially on her birthday.