Thursday, October 09, 2014

a glioblastoma meditation

It's been nearly five years since my mother died of brain cancer. I still feel her loss keenly. The random moments during which I cry for no reason now come less frequently, but every now and again there's that intense stab of loss and misery that makes January 6, 2010—the day she died—feel as if it were only yesterday.

I've wondered, sometimes, whether my mother departed on her own terms. My gut feeling is that she did: she saw the pain written on my face on December 22, 2009—when I heard the news from the young, hotshot doc that Mom was no longer a candidate for his Avastin therapy—and chose to pack her bags. I remember that afternoon, how crestfallen I had been after hearing the doctor's news. I was alone with Mom in our hospital-sponsored New York City hotel room; no one else was there, no friends or relatives, so no one saw how I cried openly in front of Mom, holding her hand and telling her "I'm sorry, I'm so sorry"—over and over again. Our family's last, desperate measure had failed to grant Mom any extra time. This was it. There was no more that anyone could do. Mom sat in her wheelchair, so far gone, her poor brain so riddled with tumors, that she was no longer capable of evincing any emotion. She sat there, just looking at me, quietly taking in my tears. And I suspect that, that very night, she decided the time had come to leave this world behind. She had seen my naked misery, and she chose to give the only gift she had left: to spare her family any further suffering. She let go.

On the night of December 22, Mom went into respiratory distress. The ER docs said it was because of the food she had aspirated since she was no longer able to chew and swallow properly. Food particles were in her lungs, gathering bacteria, spreading infection through her body. By the following day, my mother was hooked up to a ventilator and no longer conscious, as far as anyone could tell, and that's how she stayed until she died in an ICU berth at Walter Reed Medical Center. Her body died on January 6, but I'm convinced she really left us on December 22. Did she check out on her own terms? I can only hope she did. We had chosen to help her fight as long as possible, but at some point you have to acknowledge the inevitable. It could be that Mom was the quickest of us to face the facts.

My brother David sent me an article, the other night, about a young, 29-year-old woman named Brittany Maynard who, like Mom, has been diagnosed with glioblastoma multiforme (GBM), the most common and most aggressive form of brain cancer. You should definitely read the article before you continue reading this blog entry because some of what I'm going to say next will refer heavily to what was written on

After I finished reading the article, I texted the following reaction to David:

The article you sent was touching, horrifying, and depressing. I now find myself guiltily wondering whether we should have let Mom go earlier, and with more dignity. She was a miserable wreck at the end—ravaged by infection and all collapsed in on herself. She deserved better.

The article was also horrifying on two counts: (1) the woman's refusal to acknowledge that what she wanted was effectively a form of suicide (I think suicide as a way of dying with dignity is the only legitimate form of suicide, but let's be honest that that's what it is), and (2) her desire to end her life on her husband's birthday. That was positively ghoulish.*

Still, I was touched by her struggle, her clarity (obviously they didn't debulk the tumor and remove much of her cognitive capacity), and the pain her family was going through. Was also struck by her family's acceptance of the facts, which stands in contrast to Emo's [my aunt's] constant denial.

Unless you've been there at the moment of a parent's death, you don't know—you can't know—what it's like to see your mother's wasted body just lying there, still seemingly breathing because, even though the doctor has just pronounced her dead, the goddamn ventilator is still attached to her, making her chest rise and fall, creating a gruesome travesty of life. You can't know what it's like to see the pressure cuff still attached to her upper arm, inflating and deflating, and to rip it angrily off, only to discover that her upper arm has had all the juice squeezed out of it by the cuff, leaving only bone where a bicep should be, and puffed-up flesh both above and below the cuff—flesh that, because your mother is dead, refuses to return to its proper shape, to behave like normal, living tissue.

People keep telling me that the more pleasant memories of my mother, scenes from a life well lived, will reassert themselves and supersede this horrible imagery. It's been almost five years, and I'm still waiting for that to happen.

Brittany Maynard has been told she has about six more months to live. She's been made well aware of what manner of fate awaits her down the line. If you've read the article (and perhaps watched the video at the bottom of the page), you can guess that she didn't undergo anything nearly as extreme as the debulking** surgery that took away most of my mother's frontal lobe. Brittany has all her marbles; she can still string ideas together in a logical, coherent manner, and she's taken full advantage of her lucidity to plan out the terms of her own exit from this vale of tears. As I wrote to David, I disagree with her denial that what she is doing is committing suicide; although I'd never preach this point to her personally, I believe she should face up to the reality of what she intends to do to herself. But I was also sincere when I told David that suicide, in Brittany's case, wasn't morally wrong from my point of view. Others might disagree, but I think the woman deserves her dignity.

So this article about a young woman with GBM took me back to five years ago, to my own experience as a close-up witness to the demise of someone with the same cancer. Brittany's right that GBM is a horrible way to go. As the doctors told us early into Mom's treatment, it's not the cancer that eventually gets you: it's the infection that sweeps over you after your immune system collapses and the body can fight no longer. I do wish Brittany well, even if I disagree with some aspects of how she's handling the prospect of her death. I hope that, when she finally does step through the Great Door, she is surrounded by loved ones, and that her passage from here to There, wherever "There" may be, occurs with a minimum of suffering.

At about this point, I think many people would say that GBM is something that "I wouldn't wish on my worst enemy." Oh, not true: precisely because it's so horrible, I would definitely wish such a fate on my worst enemy. But I wouldn't wish it on anyone else, or on the loved ones of anyone else.

I guess David's link to that article put me in a solemn mood. With Mom long gone, and with time flowing inexorably forward, the best a man can do, now, is just to try and lead as good and fulfilling a life as possible, living deeply and mindfully, savoring every moment, and knowing that each moment's preciousness derives from the brute fact that there are no guarantees in life, and that nothing should ever be taken for granted.

*Maynard actually says her husband's birthday is on October 30, and that she chose November 1 as her death date so she would be around to celebrate the birthday. This doesn't detract from my basic point, though: what I found "ghoulish" was that, because she selected that particular death date, her husband will now always associate his special day with Brittany's death. Of course, if Brittany's husband is fine with this arrangement, then what seems ghoulish to me might be freighted with loving, symbolic importance for the couple... and who am I, really, to judge that?

**"Debulking" refers to the surgical procedure whereby most of a tumorous mass is excised from the brain as a way of slowing the tumor down. About 80% to 90% of a tumor can be removed this way, but because the tumor's borders are fuzzy, doctors can't slice out every single cancer cell—not without removing healthy brain tissue. GBM strikes fast and viciously; by the time a patient is showing cognitive symptoms, the mass has already become sizable, which is what makes debulking such a common procedure. After that first step is taken, the first-line therapy then switches to radiation and chemo. Second-line therapy, which normally happens after the tumor begins to regrow despite the radio/chemo and has crossed from one lobe of the brain to the other, generally consists of stronger drugs like Avastin or whatever's in vogue now.



John said...

I don't know, I hope your mom somewhere deep within consciousness did in fact make the decision to check out on her own terms, such as they were. My mom fought leaving this life until the bitter end, and we all shared in her suffering. Those last two weeks were nightmarish. Dad on the other hand refused a feeding tube and was dead two days later. He was ready and he went.

When I think about death my fear is to spend weeks or months in pain without hope of recovery. I'd much prefer the option of having my life ended at my request. We've got a long way to go concerning patient's rights in that regard.

Lorianne said...

Nothing profound to say, other than I'm still sorry for your loss.

I suppose it's impossible to know what your mother's consciousness was like at the end. One of my grandmothers died of Alzheimer's disease, and we comforted ourselves with the thought that she probably didn't KNOW how bad things were in the end. We could see how she'd changed, but she couldn't.

Kevin Kim said...

John and Lorianne,

Thank you both for your heartfelt comments. I appreciate the insights.