Go Your Own Way

Steve Jobs challenged everything—including the advice of his doctors. Why?

Steve Jobs died of complications from pancreatic cancer on October 5, 2011, which was twelve years ago last week. Undoubtedly, several thousand other people died from cancer on that day, but I’ve been thinking a lot about Jobs lately. As we’ve discussed, my cancer diagnosis came hard and fast—by the time we confirmed it was indeed cancer, I was in a bunch of pain and getting worse by the day. When my oncologist said we’d be doing chemo, I had neither the time nor the health points to properly research and debate his prescription, and more importantly I doubt I would have wanted to. Perhaps because I depend on it so completely, I trust the institution of Western medicine—possibly too much. Jobs, on the other hand, scarcely trusted it at all, and there’s at least some chance that this lack of trust is what led to his death.

And so we’re gonna take a look at that today, not to judge Jobs, because no matter who you are and how much you’re worth, your health choices are personal and complicated and ultimately yours to make. But to use his story to help illuminate the choices we all have when we get sick, whether that’s with cancer or one of thousands of other serious, potentially life-threatening diseases. When that happens—and it will happen to most of us—there’s good news and bad news. The good news is that Western medicine has advanced tremendously in the last seventy or so years, as have many of its so-called “alternatives”—a broad term that includes everything from acupuncture to reiki to dietary supplements—to the extent that many of us now have access to what’s called “integrative” medicine, which in theory combines the best of both disciplines. The result is that, here in 2023, most of us have a lot of choices for how to treat our afflictions. The bad news is that making the wrong one can kill you.

Here are the facts surrounding Jobs’ diagnosis and early treatment decisions, as recounted by Walter Isaacson in his biography of the Apple CEO: In October of 2003, Jobs’ urologist, who’d previously treated him for kidney stones, advised him to get a CAT scan of his kidneys. Initially (foreshadowing alert), Jobs resisted, but eventually the doctor convinced him. As often happens, the test found something they weren’t even looking for: a small tumor in his pancreas. The five-year survival rate for pancreatic cancer is a dispiriting 10%, but Jobs was lucky in several ways: The first was that Jobs’ biopsy revealed, instead of the vastly more common exocrine tumor, a much rarer neuroendocrine tumor (NET), which makes up less than 10% of all pancreatic cancers; these tumors grow more slowly and have a much higher survival rate, with the American Cancer Society putting the current five-year survival rate for a localized NET tumor at 95%. Another stroke of luck was that they caught it early, essentially by chance. But certainly the way in which he was most fortunate was that he was Steve F’ing Jobs, a man with endless wealth and, more importantly, access to a braintrust of doctors and technologists that would be the envy of any patient.

So for example, per Isaacson, “One of his first calls was to Larry Brilliant, whom he first met at an ashram in India.” Brilliant is one of those storied Silicon Valley guru types whose CV stretches credulity: On top of being the former CEO of CompuServe and one-time Google bigwig, he’s a medical doctor and epidemiologist who led the effort to eradicate smallpox in the ‘70s, among countless other accomplishments, as well as a cancer survivor himself. After talking to Brilliant, Jobs then called Art Levinson, an Apple board member and the CEO of Genentech, the biotech giant whose portfolio of cancer drugs has saved untold lives (including mine—Genentech invented rituximab to treat non-Hodgkin’s lymphoma). After that, he called Andy Grove, CEO of Intel, also a cancer survivor. For most of us, our options for gathering reliable data and firsthand experience following diagnosis are a Google search bar and, like, your mom’s former neighbor who beat cancer 10 years ago. Jobs had not only the world’s best doctors but an advisory council of functionally omniscient techno-sages (some of whom were also the world’s best doctors).

This is why what happened next is so shocking. Despite this entire cohort’s insistence—Levinson apparently “pleaded every day” with the Apple CEO—as well as that of his wife, Laurene, Jobs chose not to have surgery to remove the tumor. "I really didn't want them to open up my body," he told Isaacson. Perhaps unsurprisingly for someone who spent his formative years visiting ashrams in India and practicing Zen Buddhism, Jobs opted for a host of alternative therapies instead. As Isaacson puts it: He "kept to a strict vegan diet, with large quantities of fresh carrot and fruit juices. To that regimen he added acupuncture, a variety of herbal remedies, and occasionally a few other treatments he found on the Internet or by consulting people around the country, including a psychic. For a while he was under the sway of a doctor who operated a natural healing clinic in southern California that stressed the use of organic herbs, juice fasts, frequent bowel cleansings, hydrotherapy, and the expression of all negative feelings.”

It took nearly a year for Jobs’ friends and family to convince him that surgery was his best (only) option, and he finally had it in late July of 2004. During the procedure, his doctors discovered additional tumors in his liver, indicating his cancer had metastasized. Of course, Jobs lived another seven years following surgery, his prognosis waxing and waning as he underwent extensive treatment that included chemotherapy, having his DNA sequenced for targeted therapy (one of the first people to do this), and even a liver transplant, before succumbing to his illness. It’s impossible to know if the cancer’s spread might have been prevented by having surgery back when it was first discovered, but the whole reason you take quick, decisive action with cancer is to prevent metastasis, which has an outsize influence on survival rates.

To some, Jobs’ story is an obvious cautionary tale, but that’s a bit naive. One reason it’s hard to begrudge someone their choices when navigating a serious illness is that there’s very little that’s black and white in medicine. Survival rates are just that: rates, i.e. percentages. Clinical outcomes are measured in terms of probabilities, and what you’re often left with is a situation where a given treatment’s probability of working needs to be balanced against its probability of causing side effects, which in some cases can be death, which is the thing you’re trying to avoid in the first place.

With cancer treatment, the stakes are as high as they come and this dynamic is as stark as it gets. Chemotherapy kills cancer cells, but it causes a litany of excruciating side effects, many of which we’ve discussed. And while advancements in surgery over the last 100 years rival those of NASA, cancer surgeries in particular—e.g., radical mastectomies for breast cancer and the Whipple procedure used for treating pancreatic cancer—can sometimes have checkered histories and/or can be particularly invasive.

And then on top of things like scary side effects and disfiguring, painful procedures, there are the medical institutions themselves. Anyone who’s ever had to haggle with an insurance company or encountered a hospital bill with exorbitant charges for things like Tylenol and band-aids doesn’t need to be convinced that there’s something systemically wrong with how medicine is practiced. As a type-1 diabetic, someone with a chronic, incurable disease and therefore a lifelong dependency on a daily regimen of drugs and medical devices, I’m sympathetic to the argument that it can be more profitable to treat a disease than to cure it.

For all these reasons, it makes sense to me that anyone, let alone someone as notoriously obstinate and temperamentally skeptical as Jobs, would feel inclined to want to outsmart Western medicine. But the siren’s call of alternative therapies is still exactly that: an understandably alluring option that can have tragic consequences. While no one can say with 100% certainty that treatments like surgery and chemotherapy will work or be worth the potential side effects, there is vastly more evidence of their efficacy than there is for things like herbal remedies or whatever hydrotherapy is.

Or to put it another way: For every reason we have to be skeptical of Western medicine, there are two or three more to be skeptical of the wellness and/or alternative therapy sectors. I’m not saying Western medicine is a panacea, just that I find it odd that so many people are so eager to exercise skepticism toward it when the “alternatives” are just as fraught. All the afflictions of the U.S. health care system—especially the distorting effects of the profit motive—are present in abundance in alternative medicine. As is well-documented, the supplement industry is an unregulated backwater of rampant hucksterism, and for every legit and well-meaning naturopath, there’s an expatriate quack down in Mexico with decent SEO skills luring desperate cancer patients as I type this (RIP Steve McQueen).

The cliché in leadership—which I can close my eyes and imagine Jobs invoking frequently down in Cupertino—is that it requires a skill for making good decisions with limited information. This is as true in Silicon Valley as it is in health care—you never have as much information as you’d like, but you need to make big, consequential decisions anyway, which means you need to hone your instincts. Jobs is celebrated for having some of the best instincts of any CEO ever, so much so that Apple’s famous slogan became synonymous with his worldview, and vice versa. Both were as vital to the success of his company as they were impactful on his treatment decisions, for better and maybe worse: think different.

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This is the Healings Newsletter. It’s sent out on Thursdays.

It’s written by Garrett Kamps and edited by Tommy Craggs.

It’s illustrated by Abner Clouseau, whose pen name we apologize for.

It’s about illness and recovery, and comes with jokes. 

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 “Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” — Susan Sontag, Illness as Metaphor