(Editor’s Note: My apologies for a long gap between posts here. I’ve been busy working with the people at Dana-Farber on a new fundraising campaign to raise money for NET cancer research there.)
Thanksgiving Eve
Thanksgiving five years ago was both the best and worst I’ve ever had. It was the best because, despite a life threatening coma that had ended two days before, Jane was alive and seemingly well. The night before had been difficult. My simple presence in the room seemed to be having a bad effect on Jane’s state of mind–and on her physical health as a result.
…it has to be done.
At about 10 p.m., the medical people sent me down the hall to sleep in another room. “If we need you, we’ll come get you–and if we do, you’ll need to be sharp.” The words were not comforting, but Jane and I had insisted they be brutally honest at all times about Jane’s condition and prognosis.
Thanksgiving sunrise
I slept very little that night. Mostly, I waited for sunrise. I knew, somehow, that if the sun came up and no one had come to get me, things would be all right. And they were.
The words were not comforting…
I called the front desk. They said to come over when I was ready–that things were better. I walked down the hall and turned into her room. Jane was sitting up in the bed. She turned to me and smiled. “I love you hubby.” And then I was in her arms–and we were happy.
The best of times, the worst of times
Friends brought her father and sister to visit that day. When they left, I went downstairs and found a cup of pumpkin soup. By the time I got back, Jane’s chicken broth had arrived. That was our last Thanksgiving dinner together. We watched the Patriots beat the Cowboys and Jane fell asleep. Jane thought this was the final brightening in her family’s tradition. I had hope it was more than that–but we had squeezed out one more Thanksgiving.
…and we were happy.
And that was why it was the worst Thanksgiving–because it was the last. It haunts me to this day. Twenty-four hours later, she had another carcinoid crisis and went into another coma. I spent Saturday morning agonizing over what to do: should I let her go? Was there still a fighting chance?
Decision point
A friend came up that morning and Jennifer Chan, her oncologist, came in a little later. They convinced me that there was one more card to play: a massive dose of octreotide that would run the hospital’s supply to zero and deplete supplies elsewhere in the city as well.
It haunts me to this day.
Six hours later, Jane was awake–and both surprised and delighted to be there. Thanksgiving was not a false renewal after all. She was going to go home–not for Christmas, she knew–but in time for us to spend February vacation in the room overlooking the lake we had spent the last night of our vacation at in August.
The dream–and the nightmare
We lived for that dream for almost two weeks. Doctors put in a pacemaker, friends visited, we watched television together. We even argued once or twice–the kind of arguments people who have been married and love each other have when things are going well.
…one more card to play…
Five years ago today, things started to go to hell. Jane wanted to get out of bed to use the bathroom, wanted me to carry her there. I couldn’t–she had a feeding tube and all kinds of monitors that limited that kind of thing. If she wanted to sit in a chair, she had to be lifted with a small crane.
Into the night
She wanted me too take her home. I told her I couldn’t–not yet. She needed to stay her and get stronger. “I want to go home,” she whispered.
…things started to go to hell.
She did not sleep that night. I should have known then something was wrong. But I was tired. I was cranky. I hadn’t slept in a real bed in nearly three weeks–hadn’t really slept well in months. At least, those are the things I tell myself.
The final crisis
In the morning, the nurses sent me to have breakfast. I brought it back to the room with me as I sometimes did when Jane seemed to want me close at hand. We moved her out of the bed and into a chair. We watched two episodes of Frasier and Jane started nodding off.
She did not sleep that night.
The nurse came in and asked her if she wanted to take a nap. Jane nodded. We put her back to bed and she fell asleep. I sat next to the bed, holding her hand while I read something. An hour went by. The nurse came in with a blood pressure cuff. She said the sensor didn’t seem to be working right. This was not abnormal. Jane’s arms were so thin things didn’t always work right.
The hospitalist
Nurses have great poker faces, but spend enough time with them and you can tell when something isn’t quite right–and we’d asked for honesty. She went to find the hospitalist. He came in and ran through Jane’s vitals. We all knew by the time he was finished that Jane was in a coma. And I knew what that meant.
An hour went by.
He left to call Jen. He came back a few minutes later. “There’s nothing left to try,” he said. ” We promised honesty. We can keep her alive–maybe even bring her out of the coma. But there will be another–and she’ll just keep getting weaker. She’ll never come off the machines again–and we both know she doesn’t want to live that way.”
Keeping promises
The fighting chance had turned into no chance just that quickly. And I knew he was right–this was not how Jane wanted to live. I had promised her I would let her go if–or when–the time came. And I would do it beautifully and with honor.
‘There’s nothing left to try.’
We would start taking her off the machines in the morning, he suggested. That would give me time to gather some friends together to be with us at the end. And if she woke up, I needed to tell her what was going on. It was the hardest thing I’ve ever done–and I don’t think I did it very well.
Building the future
I will give a speech tomorrow night as we launch a fundraising initiative with the people at the Dana-Farber Cancer Institute. I’ll talked about Jane’s final days and hours. I’m not sure I’ll get through it without a cascade of tears. But I’ll do it because, just like letting Jane go, it has to be done.
…I don’t think I did it very well.
It has to be done so that someday there won’t be a need to tell her story again; so that someday no one will have to suffer what she did; so that someday no husband or wife will suffer what I–and so many others–have suffered because of this disease.
May that day come soon.