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A tale of two cancer cases

I’m not proud to admit that I resented the Batkid. Yet on November 15, 2013, when the city of San Francisco essentially ground to a halt to fulfill his dream of being Batman’s sidekick for a day, resent him I did. Wikipedia called it “one of the largest and most elaborate Make-A-Wish projects ever staged.”

I'm not proud to admit that I resented the Batkid. Yet on November 15, 2013, when the city of San Francisco essentially ground to a halt to fulfill his dream of being Batman's sidekick for a day, resent him I did.  Wikipedia called it "one of the largest and most elaborate Make-A-Wish projects ever staged."

In normal times, I might have found the event excessive but probably wouldn't have given it much thought. Unfortunately, the times were not normal for my first husband, Ahmad Khoshroo, and me. Six months before Batkid's big day, Ahmad had been diagnosed with Stage IV bladder cancer and it was becoming clear that he was highly unlikely to survive.

The Batkid, Miles Scott, was in remission from leukemia. When his wish to become Batman's sidekick went viral nearly the whole city became involved. Thousands lined the streets to cheer him as the Police Department shut down streets (at great expense) to carry out staged events which included his "saving" a damsel in distress tied to cable car tracks.

Many people found it heartwarming. But I was filled with rage. It struck me as the epitome of the candy-coated cancer world. The world of happy endings, the belief cancer can always be "beaten" if we try hard enough, and the power of positive thinking. It ignored the reality that about 586,000 died from the major cancer types in 2014.

From the trenches of Stage IV, the candy-coated worldview hurt far more than it helped.

I resented that day because my world was in a full-throttle crumble. Ahmad's cancer was progressing at a pace that surprised the doctors, charging by and completely ignoring the second-line chemo as callously as it had disregarded the first.

At that time -- and until only a few weeks ago -- there had been no new treatments approved for metastatic bladder cancer since 1978. The five-year survival rate was 15 percent. When I asked a primary care doctor about why it was so hard to find much on the internet about metastatic bladder cancer, she cynically said, "You can't build a career on bladder cancer."

The lesson was clear: If you are unlucky enough to get cancer, hope to get one on which careers can be built.

Ahmad's tumor was growing larger, pressing on his spine and rendering walking a major challenge. The fevers that would leave him delirious had begun. The potent mix of chemo, narcotics (fentanyl and morphine and Norco), and fevers often resulted in his speaking only his native Farsi, a language I did not speak.

As the crowds retreated from cheering on the Batkid, we got stuck in traffic coming home from a transfusion. At home, the next challenge was to get Ahmad out of the car and to our eighth floor condominium. He was feverish and sleepy and I could not cajole him out of the vehicle. He could not understand my English. I tried to reason, I tried to force feed him Tylenol, I tried to insist, but in the end I sat on the curb and cried.

How was it that there were thousands of people out to cheer a child who was in remission but not a soul who might help me get my dying husband out of the car?

I cried about all of it: the inequities in our world and the inequities in the cancer world. Some types of cancer receive mountains of funding and we are bombarded with incessant requests to give more for those types. Few have ever heard of other types of cancer, such as bladder or bile duct, until they or someone they know faces a diagnosis. I thought I would scream if I were asked one more time to donate to breast or lung cancer.

Ahmad died five months later.

Many months later on a cross-country flight I learned there was a movie about the Batkid. I didn't want to watch and yet I couldn't resist. I swiped my card and was able, by then, to listen a bit more objectively to his story.

The movie told the tale of his illness, his parents, his wish, and how the wish and the organization and orchestration to make it happen took on a life of their own. It was annoyingly heartwarming. He was annoyingly cute and his family annoyingly grateful.

I still worry about and question the equity of cancer resources. But by the end of the movie, I felt a little kinder and less resentful.

Renata Khoshroo Louwers is a writer and a bladder cancer patient advocate with the Bladder Cancer Advocacy Network and the Research Advocacy Network. She lives with her husband, Tim Louwers, in Virginia's Shenandoah Valley and San Francisco. This guest column appears on Diagnosis: Cancer through our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for over 800,000 patients and caregivers.

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