Woman on Top (22 page)

Now I knew on some level that Jake would die, although I refused to truly acknowledge the reality. At the bookstore near the hospital, I bought Elizabeth Kubler-Ross’s book
On Death and Dying
and hid the book from Jake until the weekend when the kids came to visit. After they went to sleep I read until the early hours of the morning.

I learned that Jake was disengaging from his friends, his children and that it’s easier for someone who is dying to say goodbye if they slowly withdraw from their former life. All Jake seemed to want now was me - he was removed from everything else in his life. He disengaged from all that had given him so much pleasure, so that he could die.

I wept for hours that night. When Chloe and Ben woke in the morning, I went into the shower and cried some more. We were now veterans of the cancer wars, which we had lost, hadn’t we? What was Jake thinking? Was he agonizing over everything he would miss as Chloe and Ben grew up? Was he worrying that we might lose our house if we ran out of money? Was he wondering if I would lose my mind when he died? I was.

The next evening it was time for the kids to leave the hospital.

“I don’t want you to go there tonight,” Jake said.

I stood next to his bed and just looked at him for a long time.

“Why?”

“I need you here. I don’t want to be alone.”

Only a very few times during this whole nightmare had I been impatient with Jake. He had been so victimized and what was being taken away from him justified whatever he did.

“I need this time to be with the kids so I can make it through another week,” I said.

“What about me?”

“All right. I won’t go.” And I stomped out of the room.

Ben started crying when I told him I wouldn’t be spending the night at the hotel. My mother took them in a taxi. I needed to be with them so badly, and once again what I or the kids or Jake wanted or needed just didn’t matter any more.

I went upstairs to Jake’s room.

“If I were the one who was sick you would have just kept on working and never have been able to do anything for me.” I regretted the words the minute I said them, but they were out.

“I would have done whatever I could,” Jake replied.

We were silent for a few minutes, and in the silence I realized I wasn’t angry at Jake but at cancer.

“You can go if you want,” he said. “If you need to be with them, go.”

“No, it’s too late.” I thought of Ben crying.

“I just don’t feel like you’re with me here. I need you.”

“I’m here.”

That night I went to sleep furious at being torn between my children and my dying husband and woke up repeatedly despairing.

The next day we celebrated what we knew would be Jake’s last birthday. Was there a right way to celebrate a dying man’s birthday? The nurses brought in a cake, Martin made an entrance, and we all sang the song. We didn’t give him a present since he wanted nothing and needed nothing, at least nothing that we could buy.

Jake’s condition continued to deteriorate. He was retaining fluid in his lungs, in his belly, and in his legs. In the hallway Martin drew me aside.

“I need to talk with you. Why don’t we sit down in the waiting room?”

“I want more treatments for Jake, no matter what.”

“Just come in the waiting room.”

I arched my back and marched down the hall. I would fight for Jake even if everyone else had surrendered.

Martin closed the door.

“Jake is very ill now, Kate. He has pneumonia, and there’s fluid near his heart. If something happens, I need to know if you want him resuscitated.”

I glared at Martin.

“I have discussed this with Jake’s brother and we both feel that he should not be resuscitated,” Martin said. “There’s no need to prolong his life.”

My mind reeled. I thought of my friends back home. What were they mulling over in their minds this Sunday afternoon: should they have dinner in or out tonight, should they put the blue wallpaper in the kitchen? Why was I deciding whether or not to put a DNR request on Jake?

“I will have to see if and when the situation arises. I simply can’t tell you now.”

“Then we should talk to Jake.”

“NO!”

“Jake should have the right to make a decision as important as this one.”

We walked down the hall to Jake’s room.

Jake looked horrified when Martin explained why he was there. For so long we had been in the same boat, sailing on the good ship Denial.

“I’ll have to let you know, Martin, I can’t give you an answer now.”

Martin left. Jake turned his head to me.

“I want you to decide if the situation arises. Tell him that.”

“I already did.”

Later that night Jake appeared to have reached a new low point. It was dark in the room; he slumped low in the bed and could no longer move without help. We had always maintained an unspoken pact - there would be no talk of an end, of failure.

As I sat on his bed and brushed a few tears from his eyes, I held back my tears for Jake’s sake until I couldn’t control myself anymore. I sat there and cried my eyes out.

“Please get well. Please, baby, please.”

“I can’t believe I won’t see Ben get on the kindergarten bus for the first time. I won’t see him play Little League. I won’t see Chloe get married. I have such awful thoughts. I think about the kids at the funeral. About them having to make it without a father.”

“What about me? Won’t you miss anything about me?” Jake’s eyes embraced me.

“I won’t grow old with you,” he said.

We had felt like children wandering through the halls of life together. But it was not meant to be. Jake’s journey would end at thirty-nine. He would not get his wish to grow old with me, and I would have to grow old alone.

When I woke up the next morning my entire body was covered with hives. The stress was breaking me down. And then Jake said the words I never wanted to hear.

“I want to go home. I don’t want any more treatments.”

He was right. But I was stunned. It had finally happened. The two world-class cancer fighters were going to give up. Cancer had won.

All of the nurses and Martin came to say goodbye. They were really saying goodbye this time. We would not be coming back this time; there would be no more admissions, no more long sieges in the hospital, no more battles over cots. We were done, and done for. Martin gave me a big hug and we went on our way, an ambulance ride to the hospital back in Connecticut.

Had we known the true nature of Jake’s tumor from the beginning, would we have made other decisions, explored other options? Maybe just have gone to Hawaii and enjoyed his last months on earth in peace. But we were so vulnerable, so gullible, so desperate.

They had made promises to us of a cure based on the premise that chemotherapy was a science, not an art. Yet one oncologist now told me that chemotherapy was a witch’s brew and sometimes the doctors get lucky and sometimes they don’t.

Our arrival in the hospital where Jake had worked was a relief. People flowed into the room, all the familiar faces. But Jake had a new edge, something he had been unwilling to show Martin. He begged Henry to get the fluid out of his swollen belly to relieve the discomfort.

“Get me out of this. I’ve had it.”

A cot was set up in the room after a simple request. Jake was on high doses of morphine, but nothing seemed to take the edge off. He woke me every hour, very alert and nervous, obviously very aware that death was imminent. As for me, I felt physically and emotionally finished. There was nothing left.

Whenever Jake woke me that night I pleaded for a few more minutes rest. Finally, I took my pillow and climbed into bed with him. There was very little room for me. Jake’s body was swollen, intravenous lines trailed across the bed, an oxygen tube rested on his chest. And yet for a brief time, it was wonderful to be laying in Jake’s arms again. I snuggled against him, against his right side, where I had always fit next to his body, closed my eyes and listened to his heart beating. But there would come a time soon when, if I put my head on his chest, there would be silence.

Jake, who seemed to draw enormous comfort from my body next to his, seemed to relax for the while as we both dozed off until the doctors arrived with the sunrise. I left our bed, our moments of intimacy ended by the start of another day in the hospital.

“Sit next to me,” Jake said, “I want to be alone with you.”

Jake remained alert. He did not go into a coma. I sat next to him, holding the oxygen to his mouth. He closed his eyes, opened them to look at me. Then he took a deep breath and this time his eyes rolled up. He was dead. It had happened, and I was not prepared. All those talks with Martin, all that crying, all that preparation and I was shocked. I ran from the room to get help and fortunately, Jake’s doctors were on their way in.

“What’s going on?” I screamed.

They raced into the room and began to resuscitate Jake. Only yesterday I had agreed to a DNR order. But that was just in theory. I wanted Jake and was not ready to let go, even now.

I stood in the hallway and wept. The nurses tried to comfort me. Some of Jake’s friends, physicians, gathered in the hallway. Then I ran to the phone and called my mother. She and my in-laws left immediately for the hospital. The doctors managed to stabilize Jake.

Again, Jake was alert, aware. He was telling the nurse how much oxygen to give him. When I pumped on the oxygen bag for a few minutes he whispered, “Get someone who knows what they’re doing”.

Then he laughed. He was cracking jokes at his own resuscitation. He had crossed to the other side and come back and he was at peace now.

My mother and in-laws came into the room and held his hand.

“I love you,” he said.

“I love you, Jake.”

The doctor asked me to leave the room.

“I won’t resuscitate him again.”

“I know.”

He hugged me and went back into the room.

“I’m going out kicking and screaming,” Jake said.

Jake would never “go gently into the night”.

“I’m so tired,” Jake kept saying.

“Then close your eyes for a few seconds,” the nurse said as she pumped the oxygen bag.

“No. If I do, they won’t open.”

He was right. It happened. Jake took a final breath, died, and this time he stayed dead. There was no resuscitation. He was gone. The body was there but there was no Jake inside it. I had never understood death before and now I felt it and I knew it.

“I have to get out of here,” I said. “Fast.”

I couldn’t look at Jake like that any longer. I felt guilty leaving his body, but I had been there when he needed me.

His mother and father, my mother and then I kissed him goodbye.

“I love you, baby.”

We left the hospital crushed. The bright lights of the day outside hurt my eyes. All the people around us seemed to be rushing. We walked as if in a fog, four dazed people getting into our car - no, it was my car now. My father in-law drove. He pounded on the roof of the car every so often, but no one said a word. We drove to my daughter’s school.

My father-in-law went inside to get Chloe while I waited in the schoolyard. Chloe walked out smiling, happy to get out of school early for the day. Her smile faded when she saw me.

I picked her up and held her close.

“Daddy died.”

As I said the words, I felt the sweetness of the word ‘Daddy’. Chloe looked at me, not quite comprehending yet what I had said. She held me tightly as I carried her to the car. No one said a word as we drove home. Ben was playing outside on the neighbor’s lawn when we drove up. As I opened the door, he happily jumped in on my lap, then looked around.

“Where’s Daddy?”

No one answered him. We all got out of the car.

“Where’s Daddy?”

“Daddy died,” Chloe said.

The tears started to fall down my face. My three year old son stood in the doorway to the garage and tried to comfort me.

“It’s okay. It’s okay. We’ll be okay, ” he said.

In my bedroom, I sat down on some pillows that were on the floor by the bed. I didn’t know what to do with myself so I called Martin, but the operator said he was out of the building.

My mother came upstairs.

“Would you like some lunch? The kids are eating,” she asked me.

The kids were eating, but I wasn’t with them, cuddling them, helping them through these first awful moments. Having lived for so long without me, they naturally went to their grandparents. I wasn’t ready for them - at any moment I thought I would die from the pain.

When the kids went to bed that night, I went to sleep downstairs on the living room couch. I couldn’t sleep in my bed without Jake.

During the next day there was an avalanche of flowers, visitors, phone calls. Jake’s obituary was in the newspaper. In black and white they had summarized and finalized Jake. It didn’t seem possible, I wanted them to print a correction. There had been a mistake.