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A Husband's Struggle with Glioblastoma: My Tribute

05/28/2008 05:12 am 05:12:01 | Updated Nov 17, 2011

When I read the first reports about Senator Ted Kennedy's glioma, my heart sank. I felt such empathy for him, and for his family. My husband, Chaim Stern, was diagnosed with glioblastoma, the worst type of malignant brain tumor, in July, 2001.

Chaim was a public figure too; a congregational rabbi in Chappaqua New York for over 30 years, and a liturgist who had written most of the modern prayer books for the reform movement of Judaism. After a joyous retirement weekend we were moving to Miami to begin a new phase of our lives -- filled, we thought, with writing, travel, more time for each other, and an interim rabbinical position where Chaim could deliver the most powerful sermons of his life.

I was driving our new car near Brunswick Georgia, just north of the Florida line. He was on the cell, and when he got off I smiled at him and whispered, "We're so lucky." A few minutes later Chaim couldn't finish an article in the The New Yorker. We pulled into a motel and when we got to the room, he looked at me in a way I had never seen before, and said, "I'm so sorry," and broke down. And then he admitted he couldn't read. And we looked at a sentence together and he spoke a garbled bunch of syllables.

I thought he had suffered a stroke. I had an ambulance speed us to the nearest hospital, and after a night of tests, doctors we had never seen before told him to get his life in order.

We were stunned, of course. We had never heard the term glioblastoma. Chaim looked well and had seemed fine. I remembered that a few months before he had complained of some headaches, but we figured he was overdoing it with relocating and celebrating. And he hardly complained.

I asked Chaim if he wanted to go back to New York and he said, "No, let's go forward." I called the temple and our friends in Miami and told them the awful news, then sped him to Miami. I turned up the Bach and wondered if I could manage the syringe I was given from the doctors in case he had a seizure.

Important papers flew out the window, we locked ourselves out of the car in Pompano Beach -- we were both in shock and hardly spoke. When we arrived at the emergency room at Jackson Memorial I was grabbed and put in a wheelchair. I must have looked worse than Chaim.

August was filled with parties despite it all. We celebrated Chaim's birthday with family and friends in his hospital room right after his first operation. We celebrated our anniversary and my birthday in another hospital room after another procedure.

Chaim hoped for two years. He got three months. Three awful, and yet, in some ways, awesome months of radiation, chemo, meaningful work and much love.

Hundreds of calls and emails poured in from throughout the world. I heard his laughter over and over. He was reliving memories with those who cared about him. The tone of his voice and writing was uplifting and even joyous. He gave a magnificent public radio interview about life. And he told many of us that these, in some ways, were the happiest days of his life.

And, too, the most precious, the most love-filled, the most appreciated, the most focused. A shy man, Chaim now hugged people and told them how much he cared. He savored each discussion with my sons, each reflection with a friend, each touch of my hand.

In the midst of our own tragedy the country mourned 9/11. He calmed people with his comforting sermons. He made light of his suffering. When he lost his hair, he wore a bandanna, and called himself "the pirate rabbi." I drove him everywhere and noticed the increased kindness as he ministered to congregants and spoke before crowds. He managed to deliver powerful, emotional Rosh Hashana and Yom Kippur services, his final goal. He seemed drained, yet happy.

The temple's Friday night services went out on the radio in South Florida, but after a while his own words, from his prayer books and his sermons, failed him. "House" became "mouse." The public listened and watched the decline, along with me.

Chaim caught pneumonia from walking in the rain to preside, ironically, over a funeral. His immune system weakened, he spent the last three weeks of his life on a ventilator, unable to speak, in an ICU unit at Jackson Memorial. Doctors tried to wean him off the ventilator but he couldn't quite make it, and he slowly, inexorably failed. We watched other patients move in and out of the bed next to his: a huge homeless Latino, a delicate Asian woman. Chaim remained.

He charmed the hardworking nurses, some so vigilant, responding to the bells and beeps going off almost constantly. But I worried that the nurses wouldn't always be there to clear his ventilator.

I visited four times a day, but couldn't stay over. At night, in the new condo we were supposed to enjoy together, I wondered if I'd get a call from the hospital. (Once I did, awakening me at 3am: The nurse said that Chaim was calling for me, and I taxied over to find him sleeping.)

We tried to please him in any way possible. My son Randall bought him tickets to a Heat-Knicks game for the following year. He was delighted. Anything that gave him hope for a while brought a grin to his face, although we all knew the ultimate outcome.

Chaim scribbled his thoughts and wishes in his notebook: "I'm in pain." Illustrations of tubes and machines. Descriptions of his love for me, to a nurse, I guess. Baseball talk back and forth with my sons, who alternated coming down from New York just about every weekend. The writings got harder to read, but his spirits stayed high till the end. He even signed a contract for a new prayer book in the ICU.

I knew it was nearly over when during the second game of the World Series he didn't seem to even notice his beloved Yankees on TV. Finally, one early November morning around 6 am I did get the dreaded call. There had been an "incident" and he was on life support. A day later, with doctors' advice, I had it removed.

With a grim diagnosis you are at least spared false hope and the ups and downs that distract from the time you have left. Accepting the inevitable, you can focus on the pleasures of the past and the precious moments of the present, carefully avoiding the difficulties of the future. Every day, fully lived, is greeted with appreciation.

My heart goes out to the Kennedy family and to all families who have to deal with this horrible reality. But I do know from experience that the end can be infused with love and caring. And for the most part, peace can come, and in a strange way, gratitude for the opportunity to celebrate a full life -- surely, clearly, bravely, with reflection, and without the distraction of what might be. And despite the difficulties, there is the blessing of closure for all.