handling Ted Kennedy's GBM

Most of what I've seen today on the news about Ted Kennedy has been about his life, not about his tumor. I suppose it's only natural to treat the death of someone important as an occasion to celebrate life, but given the media's emphasis on Kennedy's role as a health care crusader, I would have thought that more than a cursory glance at his final affliction might have been apropos. Perhaps some news agency somewhere talked in depth about Kennedy's cancer today; I didn't see any such analysis.*

And that's what I want to write about: the way Kennedy's cancer has been handled by the media over the past few months. I have no interest in discussing the senator's politics; suffice it to say that I'm neither a liberal nor a conservative, which means I find myself in agreement with Kennedy on some issues, and in disagreement with him on others. I am, however, interested in the way the various media-- especially online and on TV-- have handled Kennedy's sickness.

Even before we learned about Mom's tumor this past April 16, I was aware that Kennedy had some sort of brain tumor. As often happens when a certain type of pain makes one aware of fellow sufferers of the same pain, my interest in Kennedy's case increased once I discovered that Mom's glioblastoma multiforme (GBM) was the same type of tumor as Kennedy's. A bit of online research led to the discovery that Kennedy had presented with seizures in the spring of 2008, and that he was officially diagnosed with GBM in mid- to late May. As we now know, Kennedy survived approximately fifteen months post-diagnosis, placing him only slightly above the median life expectancy for patients who (1) are diagnosed with GBM, and (2) undergo the initial debulking surgery and the ensuing standard therapies. Patients who go untreated last only three or so months, at best.

The retrospectives on the news tonight reminded us that Kennedy spoke at Democrat functions as late as October of last year; even though his tumor was actually closer to one part of the language center than Mom's was, the surgeons must have done a bang-up job of excising as much of the tumor as they could, allowing Kennedy to retain a large measure of functionality.

What wasn't shown, though, was Kennedy's downward progress not long after that. By this summer, Kennedy must not have been capable of much at all, and as I guessed when he was absent from his sister's memorial service, he was in his period of final decline.

It was interesting to hear on the news, even as recently as a month or so ago, that Kennedy was supposedly "back at work." I tend to think this was a polite fabrication, given what I now know about how this tumor functions. Kennedy's cancer had been ravaging him for about a year; it would have migrated, as all GBMs do, from one side of his brain to the other, probably traversing the corpus callosum-- as happened with Mom-- thereby rendering a major portion of the tumor inoperable. The tumor's spread would have begun to affect all manner of brain (and, by extension, bodily) functions, making it difficult for Kennedy to appear in public without significant cost to the man's personal dignity.

I don't begrudge the senator and his family their desire to stay out of the limelight as this deterioration was occurring. Most of us have some sense of honor or shame that motivates us not to appear weak in public. As I noted long ago, we can't all be like Morrie Schwartz of Tuesdays with Morrie fame, a man who so easily let go of his earlier notions of dignity, inviting people to help him even with activities like going to the bathroom. No: Kennedy had a right to his privacy, and his family and friends probably did what they could to preserve his dignity.

But the average TV viewer was left with the impression that Kennedy had been more functional than he actually was over the past few months. Only a few days ago, on August 20, the news reported that Kennedy had "drafted" some sort of request to change Massachusetts succession law to make sure that his senate seat would not be empty upon his death. The news site Boston.com ran this piece, which was rather misleadingly worded. Note the first two paragraphs:

Senator Edward M. Kennedy, in a poignant acknowledgment of his mortality at a critical time in the national health care debate, has privately asked the governor and legislative leaders to change the succession law to guarantee that Massachusetts will not lack a Senate vote when his seat becomes vacant.

In a personal, sometimes wistful letter sent Tuesday to Governor Deval L. Patrick, Senate President Therese Murray, and House Speaker Robert A. DeLeo, Kennedy asks that Patrick be given authority to appoint someone to the seat temporarily before voters choose a new senator in a special election.

The video accompanying the article is equally misleading: it contains plenty of footage of an active and talking Kennedy, but fails to note that this footage comes from months ago, back when Kennedy would have been far more functional. When you look at the chronology and initial location of Kennedy's tumor,** it seems highly unlikely that he would have been competent to draft any letter about Massachusetts succession law even as recently as a month or two ago. GBM doesn't only migrate across the brain-- it is known for aggressive recurrence even after therapy. Killing the tumor cells becomes a game of Whack-a-Mole: you can kill cells in one or several spots, but more will appear elsewhere until the brain is shot through with cancer. So either Kennedy had drafted his request way back when he was still mentally competent to do so, or someone recently drafted it for him, and Kennedy gave it his blessing.

My point here isn't to promote some sort of wild-eyed conspiracy theory about fake documents. I don't really care who drafted Kennedy's request. What's important to me is that the media have, inadvertently or deliberately, done the public a disservice by obscuring the chronology of Kennedy's decline. In other words, an opportunity was missed to have a national discussion about GBM. Kennedy's progress, had it been somewhat more public, would have been informative to a lot of people. GBM cases surface at a rate of about 10,000 per year. It is the most common and most aggressive form of brain tumor out there, and yet most people have never heard of it. True: it might have been too much to ask Kennedy to make his own suffering public, especially given the amount of tragedy and scandal the Kennedy family has endured. But I still can't shake the feeling that the attempts to preserve Kennedy's dignity went too far, and left many people with a false impression about the progress of his tumor. As a result, Kennedy's death doubtless seemed sudden to some. It shouldn't have seemed that way to anyone.

When I learned the statistics related to GBM, had accepted Mom's prognosis, and discovered that Kennedy had been diagnosed with GBM over a year ago, I knew that Kennedy didn't have long. I wrote one relative that I didn't see him surviving beyond 2010. Little did I know, when I wrote that email a few weeks ago, that Kennedy's time was even shorter than I had suspected. Fifteen months.

As I've noted before, there are indeed a select few people who survive beyond the five-year mark: about 4% somehow manage this. But let's be realistic: half of all GBM patients are dead within a year; around 75%-80% are dead within two years. If you try to live life clinging to the hope that you're one of the people holding that lottery ticket, you'll go insane.

Considering what our family is going through now, I think it's safe to say that I have some idea of what the Kennedy family has endured during the senator's decline. I imagine that the old lion's death is both painful and something of a relief. Many caregivers report just such post-mortem ambivalence. For the Kennedys, the past fifteen months were probably made worse by all the media attention, but it would have been nice if the media had stuck to telling the simple truth about Kennedy's disease instead of leaving the public with the impression that the man was sprightly and vigorous to the very end (the video at the above-linked article is truly shameless). Just as I take a dim view of people who use their sense of denial to foist bogus "remedies" on my family, I also take a dim view of journalists who shroud or distort reality in ways not immediately obvious to the public. An opportunity to emphasize the dire nature of GBM was missed here, and that's a shame.

All that's left to say is... rest in peace, Senator Kennedy.

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*I did, however, find a May 2008 Washington Post article on Kennedy's GBM.

**The diagnosis was in May of 2008; death was in August of 2009. The tumor's initial location was in the left parietal lobe, which includes Wernicke's area, a region dealing with the receptive aspects of language, i.e., listening and reading (Broca's area, farther forward, deals with the productive aspects, i.e., speaking and writing). I don't know where the tumor spread to, but its initial proximity to a major language center eventually would have made it difficult for Kennedy to communicate: the cancer's repeated return would have seen to that.


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