The first sentence of my first blog entry began with "I write this blog hoping it will be useful for other patients...".  I thought I was done writing about this but I believe now there were mistakes others can learn from. To be clear: this is not an indictment of my care team. It is a criticism of the way US medicine is practiced so I can explain the lesson I learned, a lesson that applies to any serious disease, not just cancer.

Upon diagnosis I immediately looked up online information about gallbladder cancer (GBC). The first thing I read was the Wikipedia entry whose second paragraph ends with "The outlook is poor for recovery if the cancer is found after symptoms have started to occur, with a 5-year survival rate of close to 3%." . In short, once you have symptoms, you're fucked. 

I read everything I could about the disease and one thing stuck out, particularly in patient blogs. Every patient had two surgeries about a week apart, laparoscopic surgery to remove the gallbladder, then, if surgical samples confirmed cancer, an open cholecystectomy to remove lymph nodes, part of the liver, and whatever else to staunch the disease. I did not want two separate surgeries and told that to my surgeon, so I had a 6.5 hour surgical marathon, laparoscopic followed by an open cholecystectomy. 

Here's my mistake: if there was any chance it wasn't cancer, I should not have asked for both surgeries at the same time. If it wasn't cancer, I only needed the laparoscoptic surgery. If it was cancer, there may be little point to the cholecystectomy. If as I believe the 97% of dead GBC patients had surgery and/or chemo but still died, would I choose to have treatments that marginally increase survival time at the cost months of surgical recovery and/or months of terrible chemo sickness? The survival stats show the treatments ultimately do not work for 97% of patients.  The real choice, then, is a slightly longer life feeling bad or a shorter one feeling better.  Quantity vs. quality, in short. Both will end the same. [One caveat: I do know an extraordinarily brave English lady who has fought GBC for about seven years! She was about fifty when diagnosed, however, not 70 like me and most GBC patients.] 

Here's my team’s mistake: The people I worked with should have told me frankly and clearly that GBC would likely kill me (no doctor ever said that). They should have explained the disease, its deadliness, its treatment options, and treatments' quality of life implications clearly and frankly. Why didn't that happen? I think it is explained by 1) physicians' orientation to quantity of life vs. quality, 2) the siloed nature of medical practice (a query about chemo I made was deferred by saying that was the oncologist's domain, a specialist no one suggested I consult at that stage), and 3) a tendency to view disease treatment only in terms of the doctors’ own speciality; "to a carpenter, everything looks like a nail" as is said.

I failed myself, at least in part, because I was stunned by the diagnosis and its death sentence. I think this is exactly where the care team approach I outline below might have gotten me to step back and see the big picture. As it was, we all missed the big picture.

Here's my message: guard against the biases and shortcomings of medical practice and your own stunned astonishment. Insist your team explain each treatment option, its benefits, and the quality of life that will result. Require a no-treatment option. A slightly longer but shittier life  vs. a shorter but better feeling life? You decide. 

I hope no one I know has to deal with this. If you or someone you love does, I hope this may help find a path to your best choice. And, oh, yeah ... this really is my last word on this topic except to say again: your love and kindness formed a levy that kept despair at bay. I cannot thank you enough.