When I heard Senator "Teddy" Kennedy had a seizure last week, I stopped breathing for a moment.
Part of it is my generational response: if you're an Irish Catholic like me, who was alive for John and Bobby's assassinations, you grab onto the nearest rail whenever you hear something calamitous has happened to the Kennedys. It's like they're first cousins to our entire immigrant group.
Yet my eyes teared up for another reason: if Ted's seizure wasn't a stroke, it was probably a brain tumor, and a glioblastoma, to be exact, if it was the typical BT diagnosis.
This is what my dad, Bill Bright, died from, a couple years ago. He was diagnosed in the summer, and died in October.
Today, in the NYT, we learn that this is Kennedy's ailment as well.
The little-publicized fact about brain tumors is that our medical community doesn't know how to screen for them early, as we do with some other cancers. By the time a doctor finds a tumor in your head, it's probably very, very bad.
What the newspaper isn't saying, and what Kennedy's family might be encountering, is that the prognosis for this cancer is dismal— and mysterious. He will be encouraged to have surgery, chemo, and radiation, but the sad fact is that these procedures will do little or nothing for him, and are more for the research and benefit of others.
Doctors, by and large, are reluctant to take the initiative with you, and say, "It's over, let's talk about pain and seizure relief, and the dying process."
Why not?
It "does harm" to raise false hopes by not being frank. I had to pry the truth out my father's nurses, first. The nurses are more candid, because they don't take the heat for the treatment process or the prognosis.
But even with them, if I hadn't said the word, "hospice," it wouldn't have come up. Once I spoke the secret word, it was as if I entered a new world, where health care professionals could be honest with me.
Why won't physicians address the realities of terminal illness, particularly around cancer diagnoses? The notion and expectation that there's a cure, survivability, and that you're going to be the statistical exception... it's dishonest.
Pain management and comfort will take on giant meanings in the days to come for the Kennedy family. To die free from pain and distress is what we would wish for ourselves, and what we need to offer for everyone.
Are there experimental cures? Oh sure, you can read all about them in the voluminous comments on the NYT Kennedy story. I wish more people realized how science-fiction it is for one of these "experiments" to pan out-- and if one did, it would become mainstream virtually overnight. There is no conspiracy to keep successful brain cancer treatments underground.
The greatest advantage that could help Kennedy now is youth, which he does not have, and no alternative treatment will change that. It's tragic.
If Kennedy's tumor is a typical case, his life expectancy is in weeks, maybe a few months. He will change radically every day now. Whole abilities will disappear in a matter of twenty-four hours. Aspects of what we think of as someone's "character" and "soul" just go POOF. You realize, "Wow, that was the brain, a part of the brain that is gone."
What would I wish for Ted Kennedy? Well, this is a big order for a devout Catholic family, but I hope they pass on "fighting for his life," and instead, fight for his dignified and loving death. There's a lot of visionaries among his relatives, so maybe they'll be willing to break a few rules.
What do I mean by fighting for one's death? Well, it starts with calling the hospice caregivers in their community, and embracing their philosophy. It's palliative care, not curing care. It's midwifery for dying.
Instead of taking a meeting for a new procedure, or figuring how to "beat this thing," I wish Kennedy could take his apparently good spirits and figure out how he wants to go. I hope he says the most important things today, not a moment to spare. I hope he has family who will stick up for him enjoying his last days with the music, memories, and affection he enjoys.
I mention music, in particular, because one of the weird things about brain tumors is that you'll sometimes lose your primary language or speech, but music still makes perfect, beautiful sense to you. I sang to my dad when he couldn't form coherent sentences anymore, and he finished the lyrical line!
Brain tumors have gone from being one of the rarest illnesses anyone heard of, to a more common cause of death, and Kennedy's high profile is going to bring a lot of controversy out of the closet. Everyone who's lived through this is asking about the environment, our food, air and water supply, our technology. Brain tumors aren't in a massive upswing because there's some new hereditary link-- it's a modern way to die.
To my amazement, when I was seeking information about my dad, I only found ONE web site for families of brain tumor patients that had a "get real" attitude, with resources and explanations of what you can expect, day by day. It's called: Seeking Peace, Brain Tumor Hospice Care, which sounds like a platitude, but by the end of this ordeal, you will realize the title is literal:
THE JOURNEY with a brain tumor is an emotional roller coaster for patient and care-giving family alike. Anyone who has been a part of this experience understands the difficulty of these ups and downs. But no matter how long or hard the journey...no matter what the grade or type of tumor...when the road narrows and it is time to think about end-stage comfort, no one feels truly ready for the letting go.
No kidding. I'm still in shock from what happened to our family and friends, and this is why Teddy Kennedy's announcement presses in so close. He's been such a personal figure with a very big public message. If his story can now encompass a national discussion about environmental causes of cancer, and the right to die with self-determination, it will be a heartbreaking, but overdue look at the truth.
Illustration: Andy Warhol Foundation for the Visual Arts
