Steve Jobs infuriated family and doctors by putting off surgery in favor of alternative treatments. For more than a year, he relied on “fruit juices, acupuncture, herbal remedies and other Internet treatments.” While being one of very few people who have had their cancer’s complete gene sequence identified, he dabbled in medical voodoo.
Even the most rational of us, in the face of a terrifying diagnosis, can act like fools even to the point of foregoing or delaying treatment. I have known well some who shortened their lives by avoiding “chemo” or surgery in favor of treatments of no proven value (and, in the case of immune boosters in Myeloma, may have intensified their disease). My friends have tried all-fruit liquid diets, coffee enemas, magnetic “alignment” machines (Rife), and ruinously expensive quack treatments in Tijuana, just to name a few.
The challenges of effectively fighting a dangerous cancer are numerous. If the cancer is rare, average doctors are often unaware of current research and treatment and still administer VAD, or MP, to a younger patient: they look in the book written years ago, and do what it says. The disease is occult, so we often ruin our quality time obsessing over medical tests during periods where there is no need for us to do so. But the biggest obstacle is the fear of dying: we wouldn’t be human without that fear, but allowing it to drive the decision-making process must be overcome. When a disease is incurable and universally fatal, we, as patients, have a greater right to discuss treatments with our doctors and make choices than do those with common, curable illnesses: this is because all of our alternatives are, in some sense, bad. Pick your poison (rationally).
But too many are like Steve Jobs. Timely surgery might not have helped, but delaying it certainly did not help. Why would an otherwise brilliant man act so stupidly? He let fear (and, perhaps, denial, the other great mechanism for self-defeating behavior in cancer) get the better of him. My book, if I can live to finish it, is about how to embrace fear squarely and disconnect it from medical decisions while also fighting cancer with evidence-based medicine. It suggests ways to improve ones remaining quality of life by giving the cancer as little time and effort is possible.
Right now, in my personal battle, QOL has become an issue, mostly as a result of doctor indecision (but also due to Velcade, dex, and a stupid cold). I did my homework, I know what I want to do, but getting it through the tumor board is proving to be challenging. While waiting in suspense through this infuriating bureaucratic delay, my good time has diminished, but, hopefully, in a week or so, the course will be decided and I can return to fully living my life.
Here’s the story: