Tuesday, May 5, 2009

a possible breakthrough

My aunt departed for Houston this morning, so I seized my opportunity. I may have convinced Mom, finally, of the necessity of going down to Houston to do the M.D. Anderson consult.

Early this afternoon, after my brother Sean had come and gone, I sat with Mom on her couch, in front of the living room TV, and showed her the "before" and "after" pictures from her pre- and post-surgical MRIs. I explained, as much as I could, what she was seeing-- the MRI's "camera angle," the different parts of her brain, skull, and other soft tissues... the cloudy edema surrounding the tumor, and the fuzzy-looking mass itself. It was the most morbid slide show I've ever conducted.

Mom, to her credit, seemed to take the grim presentation rather stoically, but when we got down to discussing her prognosis, it quickly became obvious that, up to now, she had not absorbed the true import of what all this means-- how aggressive glioblastoma multiforme actually is, and what her prognosis is both with and without treatment. Today's news obviously hit her hard, and she latched on to the notion of being dead in 3 months-- which, as I emphasized, is a strong possibility for people who receive no treatment. We discussed survival rates up to and beyond the one-year mark; I told her that we were looking into new treatments, such as Avastin therapy.

"So, even with all this, I might be dead and gone in a year?" Mom asked, incredulous.

"That's one possibility," I said. I wasn't about to sugar-coat things for her.

Mom got that resigned look she's given us in the past. "If I die, I die," she said. But at the same time, she said she understood why it was so important for her to get help. Though she wasn't entirely clear on this, I got the impression that our talk had made her more amenable to the notion of flying down to Texas on Thursday (Mom has an appointment tomorrow morning at the National Cancer Institute; we'll be discussing Avastin therapy and other matters with Dr. Harold Fine). The fact that I was crying toward the end of my spiel might have nudged her toward acceptance of the need for treatment.

But Mom's signals to me were mixed. Things might change in the next few hours as she digests the bad news; she might acquiesce totally, or she might wall herself off and stubbornly refuse to go anywhere. I held her hand for most of the time I was talking with her, squeezing it on occasion. She always squeezed back, even as she was balking at the news. I take that nonverbal cue as a good sign.

I understand Mom's fatalism, though. Personally, I'd want to get things over with as quickly as possible: why linger and put everyone through the misery of a slow decline? Why cling greedily to life when you know the prognosis can never be rosy? I know exactly what Mom is thinking; neither of us is the type to beg and plead for more life, though we're both open-minded enough to at least try some treatment options. Mom now knows that, even with treatment, her prospects are, in all likelihood, very limited. That's the nature of this vicious, poorly understood tumor: it sneak attacks you, you break it up, and it reappears in little spots here and there until therapy becomes less about preserving cognitive function than about easing the victim's decline. This is the path that Ted Kennedy is already following; statistically speaking, my mother will likely soon be his companion on this sad road.

But as I also told Mom, this doesn't mean the situation is hopeless. Thanks to Mrs. Landgrabe (my old French teacher, whom I mentioned in my previous post), I know, for example, that Dr. Fine at the National Cancer Institute has a higher-than-average number of GBM patients who survive beyond the four-year mark. Dr. Meister had told us, early on, that one of his patients has gone four years with no recurrence of GBM after the therapeutic regimen. There's still reason to hope. Life from here on in might not be cancer-free, but it's possible to live for years without a major recurrence. Now, at the very beginning of treatment, it's not unreasonable to think this way. It's not irrational to say, "We're gonna fight this."

So I've laid all the above out for Mom. I think she has a better idea of what's at stake, and I don't blame her for taking it badly. I'd need time to process all this, too, if this were my first time really understanding the situation. If anything, I'm proud of her bravery in the face of this crisis; what she faces is nothing less than the end of her world.

Upshot: I'm not a betting man, but I think Mom will be boarding that plane to Texas, with Dad at her side, this Thursday. She might not want to do it for herself, but she'll do it for us. All we want her to do is visit the clinicians at M.D. Anderson; nothing's been decided about where she'll be receiving her routine treatment.

I asked Mom whether she'd understood everything I'd told her. She gave me a dirty look: "I understand, OK?"

Mom's annoyance has never been so pleasing.


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