I heard the ring tone on my iPhone playing Simon and Garfield’s Homeward Bound, a signal that "home" was calling. The digital clock on my dashboard said 6 pm. Tears slowly ran down my face and dropped onto the steering wheel. I was struck with overwhelming sadness like a hot flash that randomly washes over you for a brief moment and then disappears. I glanced at my phone laying on the passenger seat. It wasn’t ringing. Unless my dogs had figured out how to use speed dial there was nobody home to call me.
Victor called me every night around 6 and every night he asked the same question, “What’s your Theta?” It was his way of asking, "When will you be home." He was non-judgmental about the answer. Whatever I said was fine. "Will be on my way in five minutes," "It will be hours," “I’m in a meeting, I'll call you later,” And he knew that if I said “soon” it could mean an hour or more. He’d respond with something like, "The kids want to watch Friends at 9 and we are having chicken for dinner." I’d reply, "I will be home by 9 then." And I would be. All very casual. Never an argument. Non- eventful. But he always included a little incentive to get me home. Not the chicken. He only knew how to make three things for dinner and they all involved a can of Campbell’s cream of mushroom soup. Rather, something he knew I wouldn’t want to miss. He knew how to gently reset my priorities and tell me to shut it down at work and come home without ever saying, “Shut it down at work and come home.”
The thing is, I didn’t realize any of this. I learned it the hard way. We found out he was going to die three weeks before he did. We had been living with his rare but treatable cancer for nine months, but death was not considered. Dr Benson leaned over Victor’s bedside on a Monday morning and said with a eerie calmness in his voice that the pathology was clear. The diagnosis was correct, neuroendocrine carcinoid. (In other words, we did not make any mistakes.) The tests indicated it was responsive to Sandostatin. (We did the right course of action.) His behaved in a very unusual way. (But we did everything right.) It was far more aggressive than typical and has taken over his body. There was nothing's more they could do for him. (It’s not our fault.). He looked me in the eyes and said, “I am sorry.” And then he left. I am not sure if we ever saw him again. This was the world renowned expert in neuroendocrine carcinoid whose assistant said to us at our last appointment before we left on our Michigan cottage vacation. “Nothing dramatic would happen in two weeks.” I never saw Bridget again but I wanted to tell her that I did consider a $20,000 ride across the lake in an emergency transport plane to be dramatic.
I have very little recollection of my reaction. We knew, of course, what Dr Benson was going to say before he walked into the room. We had been waiting all night for the doctor to arrive to tell us the news that we already knew. But this was the process. Victor was calm. No anger. "It is what it is." We took our cues from him. “I have had a good life,” he said. We didn’t tweet in 2008 but the news spread like a wildfire and people started calling and visiting. I was beginning to panic. How do I do this? How do I sit by my husband’s bedside and wait for him to die? Who do I call? Is there a book for this? A Web site? Has someone written Dying for Dummies?
After Dr Benson left, the intensive care doctors began planning Victor’s transport over to the new Prentice Women’s hospital 16th floor. The terminal cancer ward. We had been there before. Then unexpectedly a group of women walked into the room. “We are your Palliative care team,” one of them said. I am thinking what the hell is a Palliative care team? There were 3 of them. A particularly stylish woman was the leader. She was the only person not wearing doctor hospital clothes. She was colorful in her St John knit suit with a beautiful shawl that looked like it was imported from Asia and Taryn Rose shoes. “I am Dr Jamie Van Roenn and we will help you and your family with end of life care. Our goal is to make you as comfortable as possible and help you with pain management.” “His or mine?” “Both.”
She was a straight talker. Calm. Did not dance around the question nobody else would answer. “It is not immediate, but if you live more than a month I would be surprised. “ Dr Van Roenn said clear your calendar and take this time you have together to enjoy each other. Sit with with your wife alone and with each of your daughters. Your conversation goes like this. Please forgive me, I forgive you, thank you, I love you, and good bye. “We are here for you if you need anything. One of us will visit everyday. Here is my cell phone number.” Any conversation about hope or can’t we try another treatment was cut off with a hatchet. “He is going to die.” she said. “The opportunity to say good-bye is a gift.”
And then it began. Three weeks of complete terror combined with pure joy. The wildfire of news burned out of control and people started coming. A cousin from Los Angeles. College roommate from Boston. Summer friends from Texas. Relatives from Cincinnati. It was often too crowded in his room. They gave us a bigger room. The activity was numbing. The guard in the lobby stopped asking what room everyone was going to because he already knew. My friends rallied. One took my phone away and screened my calls and one created a website on Lots of Helping hands where people could join the community. Victor and I made a post once a day so everyone could be part of the process. A schedule was created. No more visitors without an appointment. Open hours from our closest friends after 5:00. Nobody before 9am. That was my time.
Routine set in and we could sit back and enjoy. Most nights I slept on the pull out couch so when Victor woke in middle of night I could be there. I set up speakers with my iPod and we listened to music. A lot of opera and the Beatles. He would say, “Let's check the website”. And on the computer screen was an outpouring of love and memories. Stories from college. Pictures we’d never seen before. Messages of love and friendship. “Megatons of nostalgia” he would say. “As we lived in the moment like we had never done before.”
Dr Van Roenn would stop by daily. After two weeks I said, “I am exhausted. I need to sleep.” She looked at me and said, “You have your whole life to sleep. You don’t need to do it now.” At one point I broke down sobbing and said, “I can’t do this anymore.” She pulled me out into the hall and said sternly. “Look, you are doing this as well as anybody I have ever seen don’t stop now.”
He didn’t feel sorry for himself or express anger. He was every nurse’s favorite patient. He enjoyed his last days of life. And so I did. We all did. Friends and family would come and go. My friends from work would stop by. We watched the Cubs while listening to Steve Goodman’s, A Dying Cubs Fan’s last request. I brought in wine and cheese for our guests. A cousin sent a oil painting to hang in his hospital room. We watched the Chicago to Mackinac race from his bed. Our two daughters, Ellen and Louise, and I sat on the side of his bed and sang songs around my computer like it was a campfire.
And every morning Victor and I would watch the sun rise together. I would make coffee and he would sing “coffee for the sweetie”. A song that he sang for me everyday of our married life as he delivered coffee to me in bed. Just the two of us. Life was good. It was one of the best times of our lives together.
And then he died. And I am alone but not lonely. And I keep talking to him. I forgive you, please forgive me, I love you, thank you and I am so happy that I got to say goodbye.
And I wonder. What if we had that conversation and he didn’t die. What if we planned 3 weeks a year to just enjoy life together. Or even one day. I forgive you. Please forgive me. Thank you. I love you. But not good-by.