I finished reading The Emperor of All Maladies two weeks ago. I have waited until now to write about the book in any detail for two reasons. The first is pretty obvious: Jane and I lived many of those stories. The first chapter launches into a discussion of a case of a rare form of adult leukemia. The disease has been discovered very late in its course. The woman is deeply ill, so ill that she has to make daily runs to the Dana-Farber Cancer Institute to see if she is healthy enough for her chemo treatments. For weeks she is told no, she is not strong enough.
Jane did not have leukemia, but we had to wait for weeks because her cancer load was too high to risk the heart operation she needed. And every day we had to wait left her heart valves more and more damaged, left her body weaker and weaker, left her with less and less chance of successful surgery.
The woman in the book, though, had treatments that offered hope of real remission. For Jane, all we had were drugs that might slow the progression down–but nothing that would knock the cancer backward. Jane’s case was more analogous to the children with late stage leukemia in the late ’40s and early ’50s. Reading those stories was hard–at times wrenching. Many were simply too close for comfort.
But equally hard to deal with were the stories about the medical and social politics of cancer. We laypeople like to think of doctors and researchers as altruistic sorts who share their knowledge about diseases and their cures selflessly. It turns out this is rarely the case. The medical people play with their cards very close to the vest, often withholding information from each other in the hope of getting the fame that goes with the credit for a scientific breakthrough.
And as though that were not bad enough, the cancer organizations are rife with both internal and external politics. The takeover of what would eventually become the American Cancer Society by the Laskers and their allies in the 1950s has all the hallmarks of a Machiavellian overthrow of a nation’s leadership. And the battles between groups vying for funds for their particular cancer is not significantly nicer at best–and considerably more vulgar at worst. People are less interested in creating a bigger pie for everyone than in maintaining and expanding their own piece of the pie.
And God help you if you have what the majority has termed a “minor” cancer. Trickle down economics provides more money for the impoverished than a “minor” cancer gets if it is once bullied away from the table. If the federal government turns its back on you, and so will the major foundations and drug companies.
And Jane contracted one of those minor cancers. There had been no serious money spent exploring NET/CS in the US for a very long time. Once her first doctor missed the diagnosis, it was only a matter of time before it killed her. She, at least, knew what she had. Most never do.
That has to change.
