My Child’s Brain Tumor Was No ‘Gift’

 

By Suzanne Leigh

 

There’s a video circulating the Internet with a provocative message. A successful, midlife woman tells her audience that five months ago she had a brain tumor and she’s grateful for the experience.
 
Adversity can do incredible things for you, apparently. “You will feel loved and appreciated like never before.” You will have a “new understanding and trust in your body” and you also get to have an “eight week vacation of doing absolutely nothing.”

 

Oh, and one other thing: You will “eat countless gourmet meals.”

 

Now I was suspicious. As the mother of a 12-year-old daughter with a brain tumor, and as one who has known many other brain tumor patients over the years, I’ve never noticed any interest in gourmet meals.The exception being the sort of feverish round-the-clock, raid-the-fridge binging caused by high-dose steroids, which are prescribed to reduce brain swelling and come with the hefty collateral of depression.

 

So I was curious to find out the kind of brain tumor this cancer survivor had. It turns out that Stacey Kramer had a hemangioblastoma, a benign tumor that is treated with surgery or even a single radiosurgery session.

 

Apart from the disingenuity of passing it off as cancer – at least, according to the headline accompanying the video – which to the uninitiated is typically associated with the radiation and/or chemo that Kramer doesn’t appear to have needed, there’s something nauseating about describing a brain tumor as a gift.

 

My 12-year-old lost her life to this “gift” and while we hope, desperately, that she always felt “loved and appreciated,” we know that she did not develop “a new trust” in her body, nor did treatment or recovery from it ever feel like a vacation.

 

Recently I spoke with the mother of a young brain tumor patient who, like Natasha, underwent brain-spine radiation following a devastating recurrence. Her daughter was one of the lucky ones: she’s alive and years later remains tumor-free. But she pays the price for the ample dose of radiation on a still-developing brain, with impaired mobility and slower mental processing. She needs a walker and a classroom aide. In addition to worrying about a late recurrence, this family has to worry about the real possibility of a secondary cancer — a cancer caused by the toxicity of the radiation and chemo that “cured” her. Yet another “gift,” I guess, but one that most hemangioblastoma patients never get to contemplate.

 

Kramer is not the first person to talk about cancer being a gift. In her book “The Gift of Cancer: A Call to Awakening,” Anne McNerney states that cancer is “your ticket to your real life. Cancer is your passport to the life you were truly meant to live.” Really?  During my time taking care of Natasha in the hospital, I’ve seen young brain tumor patients with visual impairments, limited mobility and those that have required a ventilator to breathe. Their diagnosis did not offer them a passport to anyplace they would have chosen to visit.

 

Cancer-as-a-gift falls into the same category as the “think positive-to-cure-cancer” movement, which suggests that optimism per se might be enough to ward off a tumor recurrence. One study of breast cancer patients found that 60 percent attributed their survival to a positive attitude. Not true, according to the results of a study that tracked more than 1,000 head and neck cancer patients, which concluded that there was no correlation between emotional wellbeing and tumor growth or long term survival.

 

There’s one famous trouper of Cancerland who preached the virtues of both positive attitude and viewing cancer as “the best thing that ever happened to me.” He is alive and well, but he’s lost credibility with many people these days. His name is Lance Armstrong.

 

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Suzanne Leigh is a freelance writer. She blogs about Natasha, her surviving daughter Marissa, and her new life as a bereaved mom at:

www.themourningafternatasha.wordpress.com