From Abracadabra to Zombies
by Walter Isaacson
Simon and Schuster 2011.
reviewed by Bob Carroll, Feb 2016
By now, anyone interested in Steve Jobs (1955-2011) knows that he was a bastard responsible for some of the greatest gadgets in human history. Even though he never finished college and knew relatively little about engineering, he co-founded Apple with Steve Wozniak, acquired Pixar and successfully ran both Apple and Pixar and was the driving force behind the Macintosh computer, the iPod and iTunes as well as the iPhone and the iPad, among other things.
One of the recurring themes in Isaacson's long-winded account is that Jobs was an obnoxious, selfish, stingy, deceitful, disagreeable person with an inflexible will. Indeed, if one stopped reading the biography after, say, 150 pages of this 600+ page tome, one might think that Jobs suffered from a debilitating personality disorder and that his chances of accomplishing anything in the business world were negligible.
Jobs was an extraordinary talent with a complex personality, a fast thinker who made judgments before others even understood what was being said. His accomplishments in the business world speak for themselves. What I plan to focus on in this review, however, does not include his quirky personal habits or his seeming lack of empathy for those of us with feelings. Rather, I will look at his belief in the power of intuition and how it affected the way he went about dealing with the cancer that ultimately killed him.
Jobs died at age 56. He had been diagnosed with cancer eight years earlier, in October of 2003 at the age of 48, during a CT scan looking for kidney stones. The scan showed nothing in the kidneys but did show something growing on his pancreas. His urologist had to cajole him into having a biopsy. "You have pancreatic cancer" is not something anyone wants to hear. If Jobs had exocrine pancreatic cancer, the median survival rate would have been about four months; if he had endocrine pancreatic cancer, the median survival rate would have been about seven times greater, 27 months.* More than 95% of pancreatic cancers involve exocrine tumors. Those with pancreatic neuroendocrine tumors, or pNETs as they're called, are rare. There are about 1,000 new cases of pancreatic neuroendocrine cancer (PNC) per year in the United States. I was one of the new cases in June 2014.
Jobs must have felt blessed when told he had the lesser of two evils. We're told by Isaacson that Jobs's doctor teared up with joy when delivering the news that he had cancer but it wasn't adenocarcinoma, cancer of the exocrine pancreas. Cancers of the endocrine system usually, but not always, tend to be slow growing. Those with endocrine cancers often live many years with their disease before dying of something else. Jobs survived for about 96 months after diagnosis. The five-year survival rate for pNETs when the tumors are localized and resected (i.e., surgically removed) is about 55%. That rate drops to 15% when the tumors have spread and are not resectable.* Jobs was advised to have surgery ASAP. He declined. By the time my cancer was detected it had spread to the liver and bones and was not resectable. My oncologist reckons that the cancer had been growing for five or six years before detection. We have no idea how long Jobs's cancer had been present before detection, but Isaacson indicates that the cancer had not metastasized when Jobs was first advised to have surgery.
His doctor wisely advised surgery to remove the cancerous parts of the pancreas and, perhaps, other nearby items like the spleen, gall bladder, and part of the intestinal tract. I say 'perhaps,' because neither Isaacson nor any other biographer of Jobs, as far as I know, was given access to his private medical records. Jobs demurred. He didn't want anybody cutting into him. Who does? For nine months after his diagnosis, he tried herbal remedies, a vegan diet with large quantities of fresh carrot and fruit juices, acupuncture, and other treatments he found in the Internet cesspool of "natural cancer cures" and their seductive Sirens luring magical thinkers with promises of a cure without surgery, radiation, or chemotherapy. He consulted a psychic and worked with an "herbal therapist" who was big on organic herbs, juice fasts, and bowel cleansing. None of these "treatments" cured his cancer or stopped it from growing. By the time he agreed to surgery, tumors in his liver were discovered.
Job's primary tumor was growing on the tail of his pancreas and I'm guessing that since he was having symptoms that brought him in to be examined his cancer was causing excessive amounts of some digestive hormone to be released. At one point during his illness, Isaacson says Jobs's tumors were causing the release of excessive amounts of glucagon, which raises the amount of glucose in the bloodstream. This kind of pancreatic NC is called glucagonoma and has an estimated incidence of 1 per 20 million per year. (Glucagonoma is just one of more than a half dozen types of pancreatic NCs. Insulinoma, for example, involves releasing too much insulin.) More than half of us with pancreatic NC don't have symptoms and we don't secrete excessive amounts of hormones. Our NC is referred to as "non-functional" and the reader can understand why those of us with non-functional pancreatic NC aren't diagnosed early. Most of us, by the time we're diagnosed, already have metastases, usually in the liver and/or lymph nodes, lungs and bones. The reader can also understand why those with functional tumors usually live longer after diagnosis than those of us with non-functional tumors. Surgery significantly extends the life of NC patients, but by the time many of us are diagnosed, we are not candidates for surgery. The tumors in our liver are too many and too widespread.
As noted, Isaacson did not have access to Jobs's medical record, so we don't know whether he had glucagonoma. The technical term for Jobs's kind of cancer is neuroendocrine carcinoma. The name 'neuroendocrine' comes from the fact that nerve signals stimulate endocrine cells to release hormones. There are endocrine cells in the lungs, thyroid, pancreas, liver, intestines, parathyroid, brain, and other organs. NC can begin anywhere in the endocrine system and can spread to the liver, spleen, bones, and other organs. Unfortunately, there is no standard treatment for NC, though there are several treatments commonly used. Somatostatin analogues are commonly prescribed, for example, because most neuroendocrine cancers have somatostatin receptors. Somatostatin analogues, such as octreotide, bind to the receptors and can relieve symptoms such as diarrhea and flushing; they can even stop the tumors from growing. Another treatment--peptide receptor radiotherapy (PRRT)--takes advantage of somatostatin receptors by injecting a radioactive substance attached to a substance that will target neuroendocrine tumors and kill them without damaging nearby healthy tissue. Jobs had PRRT in 2009 in Basel, Switzerland, some six years after his diagnosis. Why Switzerland? Because the FDA has not approved of PRRT. The treatment is not officially approved anywhere in Europe, either, but it has been used for over two decades with great success. A phase III clinical trial was so successful that many neuroendocrine cancer experts expect the FDA to approve the treatment in the U.S. in late 2016 or early 2017.
We know Jobs had surgery, targeted therapies based on molecular sequencing, PRRT, and a liver transplant. Jobs compared his situation to being a frog on a lily pond, jumping from one lily pad to another when one treatment stopped working and it was time to try something else. Some describe the situation as a kind of chess match: you have to try to keep one step ahead of your cancer, anticipating what move to make when the cancer makes its next move. RTE journalist Tommie Gorman likened it to sleeping dogs: when they get angry, you have to calm them again. None of us with NC, it seems, favor the common comparison to fighting a battle. (In recent months, however, dealing with nausea, vomiting, lack of appetite, etc. have made the battle analogy real for me.) Anyway, for someone like Jobs who is used to leading and taking control of the situation, this must have been excruciatingly frustrating. There is no cure for NC and, in the end, the best these treatments could do is extend his life by a few years.
Some people think that Jobs would have lived longer had he not delayed his surgery. They think that if he had had the pancreatic mass surgically removed soon after diagnosis that that would have prevented the spread of the disease to his liver. He gave up an opportunity to have his cancer removed. He could have been "cured," in the sense that he may have had no detectable cancer after the surgery.
Based on what I have learned over the past twenty months of researching this disease since I was diagnosed with non-functional pancreatic NC, I would say that it's not very likely that he shortened his life significantly by his sojourn into the fantasy land of magical thinking and intuition about things he knew nothing about. I have gone to national and regional conferences, attended meetings of neuroendocrine cancer support groups, continue to follow a forum for pNETs, and yes, scour the Internet for reliable information on my kind of cancer and current thoughts of experts regarding treatments. I certainly don't know more than my local oncologist about cancer, but I think I know more than he does about current thinking among those who specialize in NC. There are 200-300 different kinds of cancer. Most oncologists are not specialists in any of the rare kinds of cancers. The likelihood that your local oncologist would be extremely knowledgeable of neuroendocrine cancer and current treatments is slim. Jobs went to Stanford Medical Center for his treatment. Stanford and UC San Francisco Medical Center are both centers of excellence in NC. Jobs is not alone in magical thinking about cancer. It is quite common, in fact, to find very intelligent people who think they can beat their cancer with natural cures, especially some sort of magical diet. Many of us with cancer, however, act out of obvious self-interest and investigate our disease and what treatments are available. Patients with rare cancers are often active researchers, so it is inevitable that many of us will become more knowledgeable than our local oncologist regarding our disease and current thoughts on treatment. I can't count the number of times I have seen this advice give to a newly diagnosed NC patient: see an expert for a second opinion. Jobs started with the experts and disregarded their advice in favor of consulting non-experts of the worst sort: the folks he consulted aren't experts in anything, much less neuroendocrine cancer. Why did he act so irrationally? And did it cost him his life?
Based on what I've learned from my own quest to understand this disease, I think it's probable that had Jobs not had the surgery, targeted therapies based on molecular sequencing, PRRT, and a liver transplant, he most likely would have died much sooner than he did. But the nine months of vegan living, punctuated by purges and acupuncture, probably didn't cost him much time. But this is all speculative. Why Jobs, so smart about so many other things, chose to avoid proper medical care when he most needed it doesn't require much wild speculation. We know that the genius behind such innovations as the Macintosh computer, the Pod, iTunes, the iPhone, and the iPad, as well as the leader of the company that gave us great animation films such as Toy Story and Nemo, was a devotee of intuition. His belief in the power of intuition as a guide started in 1973 when the teenage hippie who would become a college dropout and experimenter with LSD took a trip to India to find enlightenment with Ram Dass (Richard Alpert). Eventually, Jobs was totally sucked in by a book that I, too, was influenced by in my youth: The Autobiography of a Yogi by Paramahansa Yogananda, a copy of which was gift-wrapped and given as a memento to those invited to his private memorial service.
There is much talk in Isaacson's book about Jobs's "reality distortion field," his belief in magical thinking, that he could bend reality to his will. I don't know if he really believed he could control his cancer by his willful behavior in the same way that he could motivate engineers and designers to do things they thought were impossible. Jobs did not worship at the altar of rationality, however. His instincts obviously served him well in the business and corporate world--if we measure success by the money he made or by the wonderful products produced by Apple and Pixar while he was at the helm. Intuition works well when you've got deep experience and knowledge to base it on, but intuition is pretty much useless when dealing with subjects of which one has no knowledge or experience. Intuition, when based on broad and deep knowledge and experience, is just reason working rapidly below the level of conscious awareness. Using intuition to treat cancer, when you know nothing about cancer, is the epitome of self-deception.
Anyway, Jobs waited until July of 2004 to have part of his pancreas removed. During surgery, several liver tumors were discovered but Isaacson doesn't say whether they were removed. If it were me on the table, and my surgeon had moved from my pancreas to take a look at my liver, I would have expected the tumors to be removed, especially if there were only three of them. Jobs's pancreatic tumor may not have metastasized when it was first detected. It's unclear from Isaacson's account whether there were detectable tumors in the liver when Jobs was first diagnosed. Many PNETs have too many tumors in all sections of the liver and surgery is not an option for us. That's how it was with my cancer. When I was diagnosed, I was advised to begin chemotherapy as soon as possible. My local oncologist suggested a type of chemotherapy appropriate for fast-growing NC. I sought a second opinion from an expert in NC at Stanford and she recommend a different form of chemotherapy, based on the fact that a pathology report had shown that my cancer was not fast-growing and that the treatment recommended was likely to shrink my tumors. The chemotherapy worked great for 14 months: my tumors shrunk by more than 50%. I am hoping to go to the same clinic in Switzerland that Jobs went to for PRRT. (update: On March 2, 2016, I had my first PRRT treatment in Basel.) As Jobs found out, these treatments take a toll on the body and though they might stop the tumors from growing or spreading for awhile, the treatments eventually stop working. Even treatments that are working sometimes must be stopped because of pernicious side effects. Jobs liked the analogy of a frog jumping from lily pad to lily pad to depict what it's like to be an NC patient. I like the chess game analogy (except when I'm reeling from nausea and no appetite). Cancer seems to have a mind of its own and just when you think you've got it stopped, it makes a new move. But I am guided in my decisions on what move to take next by the advice of experts in the field. I don't mean that I blindly follow what any particular expert advises. Ultimately, I am the one who must make the decision whether to go with a proposed treatment. It is my responsibility to choose from among the moves that are available to me in this chess match. The experts aren't going to all agree, so I have to consider what I think is the best move, based not on intuition but on what I know about myself and the available treatments.
On October 5, 2011, Steve Jobs and 1,500 other Americans died of cancer. About 20 of those who died had neuroendocrine cancer and a handful of those, including Jobs, had pancreatic NC. There are somewhere between 120,000 and 150,000 Americans living with some type of NC. The NC group is miniscule compared to the 8,000,000 Americans who have or have had cancer who are living today. Our numbers may be small, but they are growing. Even so, if NC researchers had the same funding as those who study breast, lung, or prostate cancer, there aren't enough of us living with the various kinds of NC to do many large-scale clinical trials. Some good news for those us with NC: the money for research is getting better. For example, the National Cancer Institute recently awarded Dr. Sue D'Odorisio of the University of Iowa a grant of $10.67 million for study of neuroendocrine tumors. Also, the Margie and Robert E. Petersen Foundation has donated $15 million to the NET Research Foundation to support research and investigators dedicated to control and cure neuroendocrine cancers. Jobs was not a philanthropist and neither he nor his heirs have donated any money to cancer research, as far I know.