I met Sarah MacDonald in the early 2000s. She is the ultimate extrovert who sings, cooks, maintains a huge circle of friends, and lives life to the fullest–all at a pace & level most of us can’t imagine. In the early 2010s Sarah was flying high. Newly married, trying to get pregnant, all while being a Silicon valley business exec who had increasingly senior roles at eBay. Then in 2012 she was diagnosed with two completely separate types of cancer. And in her head “The Cancer Channel” started playing nonstop.
That became the title of her book. I just read it and I literally couldn’t stop. It’s practical, it’s heart-wrenching, it’s warm, it’s funny (yes, funny!). And it’s an amazing look at the exact experience of someone going through cancer. Or in this case cancer x 2. I was lucky enough to interview Sarah (so there is a very happy ending). So please watch this and buy & read the book
It’s a time of anxiety and unanswered questions. The diagnosis and staging phase has been described as one of the two major tension points in cancer. The other is the time after remission, when the worry about recurrence is a constant burden. One of our doctors recommended we keep a “family bottle” of anti-anxiety medication ready for those times when the stress exceeds our capacity to cope. Cancer is truly a family disease and the emotional impact extends from the patient to family caregivers.
Many friends and colleagues have offered prayers and support. A few have lamented that care coordinated by a physician-husband at a Harvard-associated hospital in Boston lacks equity since every wife/mother/daughter may not receive the same care throughout the US. Kathy and I agree. We posted these comments in response to those who speculated that Kathy’s care consumes an asymmetric amount of healthcare resources.
Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds—from 5 percent to 15 percent—albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.
It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.
Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen—that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right). Continue reading…
The central dogma of drug discovery is that academic basic research -> industry applied research -> new medical product. The disappointing number of impactful new medical products have been a source of endless soul searching, and could in theory be attributable to any (and all) of the steps in this model – and might also, as some have suggested, reflect the need for an entirely new conceptual framework.
The latest issue of Nature features a spot-on commentary (subscription only) by Glenn Begley and Lee Ellis (nicely summarized in this terrific Reuters article) that focuses in on the first arrow, the translation of academic oncology basic research into application by industry, and highlights the uncomfortable and inconvenient truth that by now isn’t a very well-kept secret: basic science is unbelievably fragile, and a lot of it doesn’t stand up to serious scrutiny.
This observation is absolutely consistent with my own experience and observations (see here, here, here, and here), as well as with those of Bruce Booth (this is a terrific discussion), and of course the pioneering research of Stanford Professor John Ioannidis, whose work I discussed six years ago (here), and who has been profiled extensively since (e.g. this piece from The Atlantic).
We could spend a lot of time discussing why science is fragile; Begley and Ellis, for example, emphasize the need for a cultural change in the way preclinical research is conducted, particularly in the field of cancer.
At the end of the day, I suspect that the problem involves some combination of the law of small numbers, the appeal of narrative, the structural advantages of reinforcing dogma, and the difficulties of publishing negative results that might challenge it, especially if the dogma was advanced by senior leaders in the field who tend to play critical roles in reviewing papers for high-profile journals and in selecting which new research gets funded. While the process may ultimately be self-correcting (and I certainly believe that science “works”), the cycle time for this can be a lifetime (literally – in some cases I’ve heard it said you need to wait for someone to pass away before contrary ideas can truly gain traction).
I found out three weeks ago I have cancer. I’m 49 years old, have been married for almost 20 years and have two kids. My husband has his own small computer business, and I run a small nonprofit in the San Fernando Valley. I am also an artist. Money is tight, and we don’t spend it frivolously. We’re just ordinary, middle-class people, making an honest living, raising great kids and participating in our community, the kids’ schools and church.
We’re good people, and we work hard. But we haven’t been able to afford health insurance for more than two years. And now I have third-stage breast cancer and am facing months of expensive treatment.
To understand how such a thing could happen to a family like ours, I need to take you back nine years to when my husband got laid off from the entertainment company where he’d worked for 10 years. Until then, we had been insured through his work, with a first-rate plan. After he got laid off, we got to keep that health insurance for 18 months through COBRA, by paying $1,300 a month, which was a huge burden on an unemployed father and his family.
By the time the COBRA ran out, my husband had decided to go into business for himself, so we had to purchase our own insurance. That was fine for a while. Every year his business grew. But insurance premiums were steadily rising too. More than once, we switched carriers for a lower rate, only to have them raise rates significantly after a few months. Continue reading…
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