My Husband Suffered the Same Brain Cancer as Ted Kennedy

As I read the obituaries about Edward Kennedy's death, I feel great empathy. My late husband, Chaim Stern, was diagnosed with glioblastoma in July, 2001-- the same type of aggressive tumor that killed the senator. And so I'm moved to post again a tribute to my brave Chaim.
My husband was 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 he didn't complain much, and we figured he was overdoing it with relocating and celebrating.
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.
And as it seemed for Senator Kennedy as well, life with a terminal diagnosis can be infused with love and caring. And 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.
Rest in peace Chaim. And Senator Kennedy.


Salon.com
Comments
I have no words to describe adequately the range of emotions this brings out. I can only say, well written and thank you.
Highly rated.
Thank you
- rated
I didn't even know about Ted Kennedy until your post. I find myself unable to concentrate on the tv lately, especially the news.
The special way in which your husband lived shines throughout your writing. Thank you for sharing this part of your journey with me, with us. It will stay with me.
What a wonderful man he must have been. What a wonderful woman you are!
Michiah
I don't have words either, but want to know how touched I am by this tribute. I trust that a "thank you for sharing this" and ((hug)) will do.
It's funny, but a few minutes ago I was concluding a meeting with a colleague, and she shared with me that her husband had died at age 55 (10 years ago) from the same tumor, and that he'd been treated here at Duke by the same physician that treated Sen Kennedy, and that her in-laws had for years told her that she didn't get him the "real experts." Today she said she feels vindicated by the fact that Kennedy had "all the resources in the world" and selected the same doctors. We finished our meeting and I opened OS for a minute nd saw your post so I opened it. I'm so glad I did.
Thanks.
It is also a tribute to your resiliency, my dear lady.
Your tribute to Chaim drips with love and eloquence, and to remembered in this manner is the greatest testament to your marriage.
Your words -- to "focus on the pleasures of the past and the precious moments of the present, carefully avoiding the difficulties of the future" -- are powerful ones for everyone, not just those of us struggling with terminal illness. What a lesson in love and life. My thoughts are with you.
glioblastoma is a heartbreaking diagnosis - a great man in my life was diagnosed with this the same month as Sentor Kennedy. he is still with us but his fiancee has just started the process for hospice care for him.
i am rambling - i can't find words for any of this. just thank you for you post.
I was gone to No read bogs and rest mu weary body, bones, and feeble Mind.
Thanks for telling more about you. Longfellow wrote:`If we sat quietly to Listen to our fellow humans one-on-one ... I paraphrased this:`We lean on others to weep. Weeping is good if we weep with pure heaqrts our genuine sadness. You are kind. Nature helps you go on with Travel privilidges. O I traveled alone, met strangers, and Traveled as if I was gonna walk off the Planet Earth. That is a hyberbole.
I wish I had a Travel Partner?
No. I was grieving my `Nam.
I wish I could say everything?
Only fool tells Ya everything'
You are discreet and Thanks.
You enjoy the Travels. Great!
There are many of us in that cycle of our lives where birthdays aren't so welcome; we'd prefer mostly to ignore them and the passing of time they represent. Your Chaim taught us to cherish every single one. To live our days to the fullest -- for ourselves, our loved ones, our fellow human beings. The reach for every single moment, and blessing.
Even knowing his fate was sealed, he gave you, his family, friends and congregants a great gift. His example lives on in his own words ... and in yours. Thank you for sharing it with us.
To you, to life, to serenity and peace, Lea. And, as always, L'Chaim.
I hope you are enjoying your day-Happy Birthday!
This is my youngest son's birthday:`August 26th.
When he was born he was so blue. He didn't cry.
I feared there was something wrong. Babies cry?
I was holding my last son and we just looking.
I am so touched to recall this joyous Memory.
It was as if we did knew each other? We do. Yes.
He's as special as any human being. Blessed day.
I am glad I came back to read comments. Bless.
I recalled a beautiful fear, joy, and full wonder.
wonder and awe. New Life in midst of sadness.
your words are wisdom in the fog of sadness. Yes... Rest in peace Chaim. And Senator Kennedy.
I wish this for you.
I felt this for you and Chaim (and Teddy).
I've heard about the blessings that come from such a diagnosis. And I'm glad you were able to experience them.
You had something some people never have. I'm sure that's a small consolation.
denese
Thanks for sharing your story Lea.
Here's to Chaim, Ma, and Sen. Kennedy.
—Melissa
You recently posted a comment on my blog about Senator Kennedy. My first thought was to tell you in a funny way that while I'm open to him being a nice guy, I'm not too open minded about his politics. Anyway, before I could answer I had to learn a little about you. Well, all I can say is I am so very sorry for you and your family.
Cancer is such a dreaded diagnosis, but no amout of dread can compare to what it means to actually live through it. I lost my grandfather about 14 years ago, an uncle to it after that and most recently my Mom. My heart goes out to you and your description of your husband so reminds me of my Mom. Fighting valiant, helping others and then finally the inability to fight any longer.
I want to tell you that you will be in my prayers tonight and may God bless you and your loved ones.
We've been very lucky so far. Her remaining cancer is losing mass and she is still extremely high-functioning, but I know that the day may come soon when I find myself writing a similar post. Thank you for showing me that one can celebrate a loved one's life while mourning their passing.
"...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..."
I will put this in my inspirational journal and refer to it whenever I find myself slipping down the icy slope of "denial." Peace, love and light to you and your family.
Good luck Todd. Maybe your wife will be one of the people who does beat this. I have heard of some.
October will mark the 13th anniversary of my wife's diagnosis. Hearing of the mortality rates and life expectancy of others afflicted with similar cancers leaves her feeling supremely lucky to be alive coupled with a heavy dose of "survivor's guilt".
We simply keep a close eye on her condition, follow her oncologist's recommendations and take it day by day. And we are thankful for each new day.
Thank you.