(Posted in Wellness Wednesdays)
I’m in the sixth grade. I come home from school and plop my books on the entry hall table. I find my mom sitting in the living room, not reading, not watching TV, just sitting.
She asks about my day, I tell her I got a part in our bicentennial play, “Let George Do It,” as a cheerleader—the “ton” in George Washington. I sing the song:
Take a G and an E and an O,
And add a little RGE,
And a double-u,
Then you take two thousand pounds,
That makes a ton,
So what do you got?
You got a lot!
She laughs. I’m the smallest kid in class—she gets the joke.
So after she congratulates me, she gets up and asks me to sit in the blue chair where she had been sitting, “Sit here and look this way with the window there at your right. Yeah, like that. Do you see flashing lights up to the right when you sit there?”
“Maybe turn your head a little this way. Now do you see them?”
That was the first sign that my mom had ocular melanoma. The cancer that would take her life only five years later.
Like most parents probably would, my parents tried to protect me from the seriousness of the situation. I knew she had cancer but I never fathomed she would die from it. Maybe they didn’t really know. I’m not even sure the doctors knew then what they know now, perhaps they gave her hope.
Yesterday, I learned more about ocular melanoma than I’ve ever known before. This article in the New York Times brought back all those memories and gave me insight that I never had all those years ago.
There’s a new genetic test for ocular melanoma patients that can very accurately predict a their prognosis:
The test identifies one of two gene patterns in eye melanomas. Almost everyone in Class 1 . . . is cured when the tumor is removed. As for those in Class 2, 70 to 80 percent will die within five years. Their cancers will re-emerge as growths in the liver. For them, there is no cure and no way to slow the disease.
When my mom was diagnosed, there was a spot on her liver. So you can see now which group she was in. The doctors monitored that spot for years before it started growing. When it did, they started chemotherapy.
I don’t remember how long Mom withstood chemo treatments, but I remember it being grueling. She’d be horribly sick the first week following treatment, mildly sick the second week, and even though she felt fine the third week, she would fall into a depression, anticipating the next round of treatment.
After several months it was clear that the treatment had failed. She was admitted to the hospital for an even stronger regimen of chemo.
She was released for a few weeks, long enough to come see me one night in my high-school’s production of “Bye Bye Birdie.” But she couldn’t even sit through the whole performance she felt so awful.
It wasn’t long after that that she fell into a coma, dying several weeks later, right after Thanksgiving.
I think if my mom really knew what her prognosis was, she might not have elected to spend the last year of her life hopelessly trying to cure the incurable. Fighting to stay alive, when all that staying alive meant was to be so sick and so tired that she could barely even endure what was left of her life. Chemo didn’t extend her life, it just made what was left of it miserable, possibly even shorter.
There are some doctors mentioned in the Times’ article that are not offering this genetic test to their patients, claiming that their patients wouldn’t want to know if they had a cancer that they could do nothing about.
Besides the fact that you are taking treatment decisions away from the patient with that approach, the final story of the article shows the other downside of that attitude. In the case of the 18-year old patient profiled in the article, she happily turned out to be in the class of patients that would be cured by removing the tumor, Class 1. Based on the large size of her tumor, without that genetic test, she would have been told that her prognosis was very bad, when actually, her prognosis was that she had been cured.
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